In honor of Functional Neurological Disorder (FND) Awareness Day approaching quickly on April 13, http://fndhope.org encourages those who live with this disorder to share their experience in preparation for this day! While this is my fourth year sharing my story, this year, I am sharing what it is like for me to live with FND- NOW. So much has happened the last few years, meaning, theories I’ve said in past posts aren’t correct anymore. The cause, and ways I manage it have all changed.
A recap for those who are new: FND is a problem with the nervous system that causes the brain to send incorrect signals to the body. My brain’s “hardware” is structured correctly, but the “software” and the way it communicates with my body is incorrect. FND impacts quality of life similarly to Parkinson’s, Tourette’s, Epilepsy, and stroke- but FND patients often run into the problem of doctors believing symptoms are made up or psychological due to no signs of abnormal brain waves. While I’ve had FND for 12 years now, I was misdiagnosed for 8.5 of those years with a movement disorder on the Tourette’s Syndrome spectrum and was told I would grow out of it. It was very clear after 8 years that was not the case, and it’s been a frustrating journey of trying to find the correct diagnosis which finally landed on FND through process of elimination. Currently, there is still no cure for FND itself because it is a complicated cocktail of neurological, biological, physiological, and psychological factors.
FND symptoms are unique to each person, but for me, it causes violent non-epileptic seizures (spells as I say) on the left side of my body. Spells happen primarily when I sleep happening in cycles through the night, but will happen during the day if I’m sick, sit too long, don’t exercise everyday, look at a screen too long, eat dairy, or am stressed/tired. They present as being in a sudden, uncomfortably stiff/frozen position with unnatural postures, then are followed by rhythmic and rigid jerks, and cycle through this until I distract myself or do physical activity to get it to stop. They started out mild; only in my left arm, but over the years it spread to my leg and neck, and have become more powerful than my own voluntary strength. It’s always been hard and embarrassing for me to explain to others why I have to do things the way I do (most don’t believe I must work out everyday or can’t sit too long until they see the aftermath if I disobey FND), but hopefully this gives more insight into why I have to do things a little differently than most. With that, here’s the latest update on me and FND- and check out my exciting announcement at the end that will be taking place April 13!
Cause: In the lyme-light
I’m so happy to have Lyme Disease. While it sounds like an odd thing to say, I can finally be part of the 30% of those that know the origin of their FND. This is a huge win after thinking I’d be in the 70% of those who go their lives without ever finding out why this happened since I’ve been in a game of hot potato of doctors the last 12 years…me being the potato. I previously shared I went to an alpaca farm in June for a wedding only to become extremely sick with Covid symptoms, but tests were negative. What was not known to me at the time was that I’ve actually had Lyme since I was 6, and something on the farm made it wake up after 16 years to create a horrible month of existence. Lyme was the missing piece of the puzzle all these years that has rid me of feeling like the muse for the song “Wonder” by Natalie Merchant.
- Mysterious hives/swollen joints at age 6 with no found cause => Given steroids that cleared all up => Steroids caused immune system to stop fighting off undiscovered Lyme in initial stages => Lyme became dormantly active
- 4 years with untreated Lyme => Bacteria reached nervous system => First FND spell at age 10 => Misdiagnosed for 8 years to follow
- No treatment worked from any doctor/Mayo clinic => Spells worsened over the course of 12 years
- Went to alpaca farm => Red spot appeared on arm => All tests indicated no illness after being sick for a month => Lyme antibodies test as a last resort => Results showed 2 strains of Lyme all these years => Series of events match up with FND milestones and Lyme effects explain FND symptoms:
- FND gets worse when sick because immune systems can’t multitask well, and mine has been trying to constantly fight Lyme for 16 years. When another sickness gets added on top it becomes too much for my nervous system.
- Sunburn, sleep deprivation, hormones, dairy, etc. create more stress on my Lyme infested nervous system, causing worsened spells.
- Not exercising daily creates a build up of toxins from no detoxification through sweating so spells worsen from stress on nervous system. Also my main method of stress relief. Any and all stress on body/mind = bad for nervous system!
There is not one thing that my Lyme Disease does not explain about my FND. I spent years praying for answers, and never would’ve thought my answers would be through a quest to puzzle a path back to my childhood! God works in mysterious ways…if it were not for COVID, the wedding would not have been moved, which means I probably never would have discovered my Lyme either. Thank God and alpacas!
Treatment: Kill everything except people
Now that I know my cause of FND, I can treat the Lyme. Unfortunately, it doesn’t mean FND will be flushed out of my nervous system, too. 16 years is a Grand Canyon amount of time for neural pathways to deepen, and Lyme caused my body to pass an internal stress threshold that triggered my FND (epigenetics jazz). Its like trying to get crumpled up paper back to its orginal state; Lyme treatment will hopefully improve my FND symptoms, but it won’t be back to my pre FND life.
Treatment looks a lot different than past attempts; I’m no longer using a techy headband listening to indian flute music for Neurofeedback therapy to train my brain waves. I’m not making old guys at Walgreens look at me weird for buying out all the pill boxes to sort my 84 supplement pills I took a day. I have not had to wear any patriotic looking electrode swim caps to map my brain. My dad isn’t delivering anti seizure medication during basketball and gymnastics practices that made me a shell of myself. I’m not on Parkinson’s medication that caused hallucinations anymore, have not had lasers shot into my head lately, and haven’t slept with sandpaper for a while. I haven’t been to the Mayo clinic in a while to give 14+ tubes of blood for testing. There’s been no peanut butter and banana brought to my bedside at 3 AM since protein apparently fixes all things, and I have not been hooked up to an epilepsy ceiling belt to go to the bathroom in the recent past.
Now, I’m on a holistic treatment called “Cowden Protocol” that was made for those with chronic Lyme. A lot are skeptical about supplemental treatment, me included, but the science has been done and targets parts that antibiotics don’t. The selected supplements are proven to flush all bacteria/spirochetes out in full which lands them a spot on the KEEP (kill everything except people) list as Dr. Cowden calls it. This has been around for 37 years and is effective for those who can actually bare to do it….let me explain:
The protocol consists of taking 14 liquid and capsule supplements four times a day for 9-12+ months. For each dose, an app on my phone tells me the mixture needed and how many drops of each. Here’s the kicker: in order for the program to work; I must take doses 30 minutes before I eat, exercise daily to detoxify tissues, cut out sugar, and the hardest one? Drink 3 Liters of water daily by taking 3-4 oz sips every 30 minutes all day long. While this doesn’t seem like a hard task; I plan out my days around drinking water and “nature’s call” so I don’t repeat my race car driver experience of finding a gas station while running errands, or seriously considering popping a squat in a backyard. The phone app sends “water pouring” sound reminders every 30 minutes, and can make things weird when it comes across my speaker on work calls (it sounds like I’m using the bathroom-found that out the hard way). Is it working? Yes. How do I know? By weird effects happening indicating the Lyme is leaving me such as random full body hives, brain fog, and swollen joints. My life is never a dull moment I can assure you.
Exercise: Cardio isn’t as hardio
As mentioned, Cowden Program requires working up a sweat everyday, but even then, those who have followed me on my journey know my FND will flare up if I don’t work out everyday. This is one of the weird quirks that I’ve wished would go away so I wouldn’t have to worry about exercising on vacations, days where I don’t have time to, or am sick. Unfortunately, the fact that exercise keeps my FND from happening has not changed…. but, it has improved! Now, I can exercise at night if that’s when my schedule allows, rather than needing to in the morning since in the past I would flare up if I didn’t work out every morning. Additionally, in the past I would need at least 1.5-2 hours of cardio to keep my FND at bay. Now, I am down to 1 hour of cardio to keep it at bay. Exercise is obviously a great habit to have, but having to be dependent on it like I have for years sucks the joy out of it. Now, I am starting to enjoy it more, as I can spend more time doing exercise activities I actually like versus strictly running or elliptical for an insane amount of time.
Diet: Goodbye rabbit girl
I wrote in a past post that my nickname in college became “rabbit girl” by the cafeteria ladies after having to go gluten, dairy, soy, sugar, and egg free. My plate would be piled high with “rabbit food” since the only thing I could eat in the cafeteria (my apartment didn’t have a kitchen) was the salad bar. Everything is cooked in soy or egg these days! This was enforced back then to heal a Candida gut infection (not to brag, but my doc said I had the worst gut they had ever seen), another result of Lyme not allowing my immune system to fight infection…which in return worsened my FND because the gut and brain are so connected by the blood-brain barrier.
Now, I am down to dairy free and minimal gluten. Cowden also calls for a temporary limited sugar and simple carbohydrate intake because spirochetes like to feed off cookies as much as I do. I most likely never will be able to fully indulge in dairy like I used to as a mac n cheese, cheesy pizza, grilled cheese, ice cream loving kid since dairy is inflammatory to the brain..but I have found some stellar dairy free alternatives now that veganism is becoming a trend!
Sleep: dreams aren’t very sweet
Sleep has been and remains as my biggest hurdle since my spells have always occurred at night. But since Lyme treatment started, the bacteria coming out of me causes my spells to become a lot more severe because my body doesn’t like change, even if it’s good change. I’ve started having unconscious spells during the night- which in turn makes me scared to sleep because I can feel the seizure coming but can’t stop it- different from the warm sensation I usually get before a FND spell. I become numb and cold on my left side before extreme pressure builds in my head, my vision blacks out, ears ring, and I feel like I’m spinning/falling before my hearing shuts off and everything suddenly stops (I don’t know if feeling unconsciousness is a thing but I know for a few seconds that I’m unconscious). The first few times this happened, I thought I dreamt it because I couldn’t remember any of it and woke up perfectly fine a few hours later. Ignorance really is bliss sometimes, especially once I was informed of what happens while I’m unconscious. Most people look forward to go to sleep, but for the last few months, I do everything I can to prevent myself from sleeping out of fear that I will black out and I won’t become conscious again while alone in my apartment. This is the first time in my life I have become unconscious from my FND, and the first time I’ve felt truly terrified of what this disorder can do.
Stress and sleep deprivation are so bad for FND and Lyme, but I am ironically in a nasty cycle of not getting sleep, and stressing over being scared to sleep which releases large amounts of Cortisol that makes my nervous system even more stressed. Recently, my doc put me on a real life chill pill (Melatonin) to balance out my cortisol levels so my body can stop thinking it’s in a civil war with itself. Thankfully it has given me some relief and I am joyfully back to dreaming about my teeth being pulled out and dancing green beans!
Work: Making invisible visible
A big fear upon graduating was how my FND would react to sitting at a desk all day since my nervous system has made clear at previous internships it doesn’t like desk jobs. As much as I wish I could actually say I’ve been to my office since my final interview, working from home has been great for me! I’m able to get up for a quick elliptical session or crank out some push ups in between meetings if I feel a spell coming. I’ve never discounted myself or my abilities as an employee because of my FND, and I proved that to be true this year, as I received my first promotion, and I now am in a new role! I am rolling off my project at Allianz and will be working on 2 HR related projects at Cargill.
Along with this new assignment, I also was selected to be on a new Diversity, Equity & Inclusion task force for my company, and serve on the recruitment enablement committee. I am acting as a voice for those with invisible illnesses in the work force (and a psychology nerd) by sharing my own experience/psychology ideas in order to create an environment that feels safe, and ends stigma for those who have conditions like mine, or other circumstances that have an unconscious bias tacked to them. Great talent can be missed simply because working conditions aren’t flexible for those with invisible illnesses, recruiters are overlooking places or categories of people, or the culture doesn’t feel comfortable! It feels amazing seeing my ideas implemented, and being in a role I am so passionate about; such as educating recruiters on their own biases, and making invisible illnesses a focus along with the other categories such as gender, ethnicity, veteran status, and race. I can confidently say that work doesn’t feel like a job, but rather a vocation.
Living situation: My own homie in my homey home
I moved this month! And I have new roommates: me, myself, and I! All throughout college, I had living situations that weren’t the right fit for me or my health (throwback to living in an office cube junior year). A big part of my FND staying stirred has been not being able to fully relax in my own space and feel “at home.” I always felt like I was walking on eggshells to make sure I made my roommates happy, or hide my FND. Post graduation, I moved to a two bedroom apartment tower with a roomie, and while all was well for a while, I still felt like I was in a dorm/hotel, and didn’t feel I had my own space to relax mentally and just “be.”
I now am in a one bedroom 30 seconds down the street that is perfect for me! There’s this thing that says people adopt dogs that “look” like them, well, I adopted an apartment that looks like me. It is tucked away with a nature trails backing up to it, and feels like a home rather than a place to live. I enjoy being on my own schedule, having my own space to decorate, and not riding an elevator up to the 6th floor anymore!
Relationships: Law of attraction
Psychology says that you attract what you focus on and the energy you give off. Once I graduated from college, I committed to focusing on being positive, healthy, and finding fresh relationships. Upon doing this, it quickly revealed to me which individuals in college were with me for the long haul. My friendships have improved so much since getting out of college and starting fresh has been so good for me. After instances of being called the “R word” in class in front of everyone, being used for my skills, a curiosity case, or being treated wrongly by those who don’t understand; it’s been a breath of fresh air finding new friends through church and mutual friends. I now don’t feel ashamed for sharing about FND with others because I surround myself with the right folks and energy.
Mental health: Blame game
I always said I was fine having a causeless and cureless condition because there were much worse things in the world…but that wasn’t all true. Denial and convincing myself that I was fine was easier than facing the fact that I was missing out on things that I loved doing growing up; traveling, last minute day trips, or sleepovers are a few to name. Every time I had an embarrassing spell in public, and the stares that followed- I told myself that it didn’t bother me…but it did. I’ve always been an independent person; and having to ask for help for easy things has been something I am still trying to learn how to do without feeling weak or down on myself. I remember one time in particular I needed help walking, and I felt so ashamed and stripped of my dignity because it’s just not normal seeing a dad help his 18 year old walk through a mall on vacation.
Having a chronic condition that impacts the simple things in life that others can easily do can really take a hit on the psychie, especially when others can’t relate and get frustrated even if I try to explain why things like staying overnight somewhere is difficult for me. I’ve learned it’s hard for others to put themselves in my shoes because we are made to be in control of our bodies, not have parts of our bodies be in control of us based on certain decisions made. While my parents have seen my deepest struggles, and know the condition in and out, they still won’t ever know how it feels and the hesitation that comes with every decision I make, and that can be super hard sometimes not having anyone that I know be able to relate to me in that sense! I still struggle with feeling bad and like a burden at times because those who are with me may have to compromise to help me manage my condition, but often times still don’t understand why I need things a certain way because explaining FND to someone feels like I’m speaking spanish to someone who only knows swahili. Stuffing all my emotions over the years trying to look/feel “normal” led to even more mental health problems and manifested in other ways such as OCD/perfectionistic tendencies, and disordered eating, to feel in control since I didn’t have control over my own limbs.
But now, finally having something to blame and having real, tangible explanations for everything that has happened to me feels so dang good and is a weight lifted off me! All the memorable spells I’ve had over the years I can blame on Lyme, rather than having no explanation as to why things happened and just having to stuff it then move on. It’s a lot easier for me to explain to others that what happens to me comes from Lyme Disease, rather than FND, because Lyme is more familiar to others. I can take more risks now because I know what will trigger Lyme, rather than not participating at all from not knowing what would or would not affect FND. Because of this, I have been able to make up for what I lost in college; having my first alcoholic beverage with my friends, eating birthday cake, celebrating good news, traveling more, and blaming Lyme for any flare ups from doing all the things I haven’t been able to do. While we learn to try not to blame others/things for our actions, I am putting full blame on Lyme Disease and that minuscule tick that made the mistake of biting me 16 years ago.
Awareness: Lighting up FND
If you would’ve told me years ago that I would be the reason the state of Minnesota is lighting up the Minneapolis Lowry Ave Bridge for FND, I would’ve looked at you like you had 5 eyeballs. My awareness initiatives started off so small years ago.
Sharing my story for the first time with the world (aka Facebook) four years ago was one of the most liberating things I have ever done. That year, I teamed up with the FND Hope organization for a fundraiser in which my sorority and a few friends and family contributed to. The positive feedback and interest I received back fueled the fire for me to keep sharing my story to educate the world about one of the most unknown conditions out there – even Mayo isn’t up to speed on it yet. To this day, I have a hard time speaking about my story (writing allows me to hide behind my screen here), but I felt called to speak at a college org campus event about my FND story and how it has grown my faith. That talk led to others approaching me with their struggles and allowing me to show them how to navigate their journeys with grace and strength like I have mine. This made me want to share even more so I could continue to help others who have experienced a chronic illness, adversity, diversity, and discrimination like I have. I started sharing my treatment experiences on social media and frequently work with FND Hope to promote FND awareness and support others who have not found correct treatment yet by sharing my theories tried. Finally, as mentioned, my efforts led to getting the state of Minnesota to light up the Minneapolis Lowry Avenue Bridge orange and blue on April 13th for FND awareness day as part of a global initiative to light up landmarks around the world.
I could easily hide my condition and avoid the stigma that comes with it, but I did that for 8 years, and that was 8 years I could have been showing others that while this condition has taken a lot from me, it has also been the origin of so many good things and some of the most fulfilling work I’ve done. I know that I’m small compared to the rest of the world, but seeing what I can make happen, and how far the FND initiative has come, gives me real hope for the future of me and FND. Thank you to everyone who has supported me over the years; the kind words, hospital visits, cards, compliments that I look great with electrodes glued to my head, patience, help, understanding, and endless encouragement to finally get me where I am today!
Join me in recognizing FND Awareness Day in less than a month now on April 13- and this year, it is a happy one, indeed!