Did your symptoms start out of the blue, or did they come on slowly over time? As an adult, mine were pretty much sudden onset, but I did have a brief encounter with what I believe were Functional Neurological Disorder (FND) symptoms when I was a toddler.
What is FND, you ask? FND Hope defines FND as a “problem with the functioning of the nervous system and thought to be the result of the brain’s inability to send and receive signals properly, rather than disease. In addition to that, they say:
- FND is the second most common reason for a neurological outpatient visit after headache/migraine.
- FND is more common than multiple sclerosis.
- FND symptoms are real
- FND can cause impairment in quality of life that is similar to other neurological conditions such as Parkinson’s disease or Epilepsy.”
Here’s my story.
My first encounter with what I now believe was FND occurred when I was almost three. I had been very ill with a double ear infection. According to my mom, I rarely got ear infections at all.
However, this one made me very sick. My mom said I was very listless and would lay down with my blanket on the kitchen floor and sleep. This is pretty significant because I was one of those kids that fought naptime Every. Single. Day. Sorry, mom! (I now have a master bedtime procrastinator, so maybe that’s my karma. 😉 )
Back in the mid-‘80s, parents were still instructed to give their children aspirin when they had a fever. So I was given that and an antibiotic to fight the infection.
When I started to improve, my mother told me I started walking funny (my gait was off), and I held my right arm in a crook. She also said my voice was off. She said when I spoke, it sounded like I was deaf.
Naturally, everyone freaked out, and I was admitted immediately to the hospital. They ran every test imaginable, including a lumbar puncture. Of course, everything came back normal – the story of every FND warrior’s life.
Doctors had no idea what was wrong with me, but since I was starting to improve, I was discharged at the end of the week.
For the most part, I made a full recovery until I was 28. Looking back, there were signs that it was still there, but it didn’t affect my life too much.
Growing up, my mom and other doctors speculated that maybe I had had encephalitis because I was given aspirin, but looking back now and I’m pretty sure it was FND.
My Life Right Before FND
August 2010 was the month my life changed forever due to FND. The official diagnosis from the National Institutes of Health (NIH) is Functional Paroxysmal Dystonia.
Before my life with FND, I worked full time as an analyst (including a lot of overtime). I volunteered and taught individuals how to use Microsoft Excel. I was an avid salsa dancer and danced at least once a week. I was also working my way back to kickboxing after being hit as a pedestrian crossing the street just a year and a half before my FND started. Yeah, the last year and a half had been a fabulous time for my health.
In May of that year, I got engaged to my wonderful husband, TJ. So I was wedding planning but nothing extravagant. The plan was to have a small wedding and get married shortly after TJ graduated with his Bachelor’s degree in December that year. Then we planned to save money like crazy to have an epic dance party/wedding reception on our first anniversary. It was a very exciting time!
July 2010 was a little hectic and physically draining, to say the least. Three weeks before my FND trigger day, it was a crazy week at work because we were nearing a big deadline, and two of my coworkers were off for the week on vacation. The only reprieve was an intern who had just started, and she was able to help a little.
On top of that, I got a urinary tract infection (UTI). It was so crazy at work that I didn’t have time to see my general practitioner (GP), so I went to urgent care where they prescribed me Levaquin. It was supposed to get rid of the infection in three days. Perfect, I thought because I was heading to the beach that weekend.
The workweek ended, and TJ and I drove eight hours down to Hilton Head, SC. By Saturday or Sunday morning, my antibiotic was done, but my infection was not gone.
On Monday, I called the urgent care back and pleaded with the nurse practitioner to prescribe me something else. This time it was Macrobid. Macrobid did next to nothing, and the pain was excruciating even with the pain-numbing pills and ibuprofen. By the end of the week, I was starting to feel pretty ill. So much so that TJ had to drive the entire way home.
Once home, I went back to work that Monday, and I finished the antibiotic by early to mid-week. With the infection still not gone, I finally headed to my GP, who had to send my urine off for testing. It was during this week that I told my boss I didn’t feel that well one day, and the next day I was out of work on short term disability for the next three months!
I felt very lethargic leading up to the trigger day. I thought I was feeling this way because of the infection. Maybe it was just the infection or possibly the beginning stages of FND. Little did I know the worst of my FND was about to be triggered.
August 2, 2010
On August 2, 2010, the sides of my mouth started to feel weak. My speech slowed, and it became difficult to speak. There were times I could not enunciate any words, and only sound came out, even though I knew what I wanted to say. To say it was freaking me out was an understatement.
The movements of my body slowed down, and my body felt heavy and hard to move. My leg muscles became so weak that TJ had to hold me up by my armpit for me to make it from the car to the ER entrance.
Between August 2nd and August 24th, I experienced the following symptoms. Just so you know, I don’t remember any of the symptoms I experienced as a toddler, and all of the symptoms listed below are things I had never experienced before in my life, well except for the last bullet. I had experienced that back in college and then a couple of times after.
- Muscle weakness on the side of my mouth
- When I overexert my brain, then speech slows down, and it feels like I have to force the words out. By overexert, I mean standing or walking around the house for more than 20 min.
- Headaches but usually right before bed or when I first wake up
- Slow movements – only occurred a few times
- Feel spacey/Brain Fog – this often happens right before slowed speech but not always
- Sometimes I feel like I’m walking weird like my right foot doesn’t move correctly – foot kind of lags behind
- Sometimes I get extreme fatigue after overexerting brain and have to lay down and even take a nap (still not a napper!)
- Heartbeat flutters and feeling faint especially in the shower
- Spelling issues when writing – adding random letters or forgetting to complete words, but typing is ok. Only noticed when speech is slow have not done much writing when speech is fine
- Sometimes have problems coming up with the word even if I’m looking at the object – this only seems to occur when speech is slow
- Weak feeling in legs
- Aching muscles in my arms and legs every morning and evening and sometimes randomly throughout the day. The ache feels like growing pains or the feeling of a broken bone ache but in the muscle instead of the bone
- Aching back sides – comes and goes in waves. Pain not daily.
- Easily winded
- Aug 6 – Speech slowed, and then it felt like a switch flipped in my brain, and I was talking normal again. Then I almost fainted. Felt heartbeat increase before things started going black.
- Early morning of Aug 11 woke up with a bad headache (at the front of my head and had a circle of pain at the back of my head), neck ache, and my face ached, including teeth. I did some research on the internet because I was afraid I was having an aneurysm or something. After I put the computer up the headache was really bad. I tried to get up to take some Advil, but it was extremely hard to move my legs. I was able to move my legs normally again after a few minutes, and then the headache died down some.
- Random sharp pain in my head. This does not occur often, but I have had it more than once. (This may not be related to FND, but if I remember correctly it was happening more frequently than before my trigger day.)
I will never forget the shock and fear I had waking up to my muscles locked in a muscle contraction. My body was as stiff as a board, and I couldn’t control it. Nothing I thought of or told my body could relax my muscles. I just had to wait it out. It was one of the most terrifying moments in my life – realizing I no longer had control over my own body.
The dystonia started on August 24th. The first time it happened was around 7 am and it, of course, woke me up. It then occurred in the middle of the night the following night. The muscles in my legs and arms tightened without me consciously doing it, and I couldn’t relax the muscles on command.
The contractions came and went in episodes, and it usually affected either both legs or my right arm and right leg. I also had stomach muscle contractions, which made it hard to breathe because it restricted the movement of my ribs. To make it worse, when I had long episodes, my hips, feet, and hands became contorted. I’ve never really timed my episodes, but they can last anywhere from a few seconds to being almost constant.
It was during this time I started using a cane for stability. I ended up using the can daily for almost two years.
On August 29th, my dystonia became more intense when I started having uncontrolled body movements. These movements involved my entire body but mostly my torso, which moved rhythmically for hours. When my body was unable to stop moving to go to sleep, my mom took me to the ER where I was given Ativan to help alleviate the symptoms.
Despite the craziness of the dystonia, I have always been thankful that I do not have a lot of pain associated with my muscle contractions. Even when I was moving non-stop, I had no pain, no muscle soreness, or even discomfort.
Looking back, I think there was something disconnected in my brain. How could I be moving uncontrollably for hours and have no muscle soreness or fatigue? It just doesn’t make sense to me. Even now, it boggles my mind because since I’ve gone into a remission of sorts and relapsed, my muscles now do feel sore and fatigued if I have a terrible or prolonged episode.
During this time, I saw my first neurologist twice – once shortly after my first ER visit and then again towards the end of August. At first, she was great, and then not so much. In addition to the MRI ordered by my GP, she ordered additional tests including vitamin D, Lyme, evoked potentials, and an EEG, and she came up with four possible theories:
- My body was/is overreacting to the infection and is now attacking itself. She said my body would resolve the problem in a few weeks.
- Scar tissue not showing up on MRI could be causing low-level seizure activity. She was concerned about scar tissue because I had suffered a severe concussion in Feb 2009 when I was struck by a pickup truck crossing the street as a pedestrian.
- Lyme disease
I have FND, so OF COURSE, everything came back normal! Well, almost, I had a vitamin D deficiency, but that wasn’t causing all the symptoms above.
Having all tests come back normal is both good and bad. It’s good because I don’t have an illness that causes brain degeneration and can only be managed with the help of medication. But it’s bad because while theoretically I can be treated and improve, finding a doctor or therapist who knows how to treat FND is like finding a unicorn.
Anyways, back to the first neurologist. When everything came back normal, her tone completely changed. She said that I must be stressed about something, that these symptoms were all in my head and I was psychosomatic. She wouldn’t discuss anything further, and instead handed me a list of psychologists to see and left.
I was dumbfounded. What the heck had just happened?! Had she even heard what I was saying??? This situation, unfortunately, is very common for many patients with FND.
Oh, it Must be Stress
The first year I was sick, I went to multiple specialists and the ER four times. The ER always said it was dystonia, but the neurologists always said it was stress. They said it was stress-related, specifically emotional stress and not physical stress. The funny thing was physical overexertion/stress was one of my main triggers.
Also, once I was labeled psychosomatic, it followed me everywhere. No doctor wanted to go against another doctor’s psychosomatic diagnosis. It was total BS.
They would see my engagement ring and say, “Oh, are you planning a wedding? You must be stressed about that.”
Our wedding was small, about 30 people and it was at Maggiano’s. Was I a little nervous about getting married because it was a life changing event? Sure, but who isn’t? It’s a huge life-changing event. Besides, almost all my stress about the wedding and marriage melted away when TJ said he would never leave me because of my illness. He said when he put that ring on my finger that was his commitment to be there for me forever.❤️
I wasn’t even close to the most stressed out I’d ever been. Here are some examples of when I was stressed to the max in the past:
Example 1: I attended one of the top public universities in the US. I’m guesstimating 95% of us were type A perfectionists (me included). I picked a major that was very difficult, and I failed my first class ever.
My stress levels were through the roof! I’m talking stress-related heartburn, stress-related weight loss, crying, and throw in a couple of panic attacks here and there. In addition to this, I was confronted with a reminder of the abuse I endured as a child. I was one giant stress ball.
Example 2: I mentioned before I was hit as a pedestrian by a pickup truck in 2009 (and no, it wasn’t a Dodge like my brother wishes it was so he could make dodging vehicle jokes. Haha).
What I didn’t mention before was that I was also unemployed when I was struck! Talk about adding insult to injury!
The concussion I received took me out of commission for six to eight weeks. It was so bad that when I finally started coming out of it, my roommate commented, “Welcome back.” I had no idea I was that bad.
Anyway, I was in no shape to look for a job for two whole months. When my concussion finally lifted, that’s when reality hit me. I’d been unemployed for four months at that point with nothing to show for it. Talk about a stressful time.
It was during that time I had a major meltdown about being injured, unemployed, and running out of money. There was a lot of crying and a panic attack to boot. (On a side note, this was the last time I had a panic attack. Yay me!)
So with just those two examples, you can see what my symptoms of stress are: heartburn, crying, weight loss, and panic attacks.
Was I experiencing any of these symptoms in July and August of 2010? No.
Was I stressed out about having a crazy condition that left me unable to control my body? Heck yeah, I was!
But even then, I was not stressing out enough that I was exhibiting any of my signs of stress. Well…I probably cried, but who wouldn’t?!
The wedding came and went. Did I get better? No, but I will tell you this. On the day of the wedding, I had so much adrenaline pumping through my body that it gave me an extra boost of energy. So much so, that I had minimal symptoms that day.
I want to make a note that while I don’t think stress was my trigger, stress does play a role in how I feel daily. But this can be said for any illness/condition.
Taking a Break from Mainstream Doctors
Shortly after the new year in 2011, I stopped seeing mainstream doctors for a year. In January, I finally got an appointment at John’s Hopkins. It, unfortunately, was the worst experience with a medical professional, ever. The neurologist I saw rude, condescending, wouldn’t listen to what I had to say. I got upset and insisted that it wasn’t stress, and he told me as he walked out of the room, “You better hope you’re psychosomatic or you have an incurable disease.”
I didn’t need any more negativity, and I was tired of these specialist doctors treating me like I was an idiot when it came to my own body.
None of the specialists (three neurologists and one psychiatrist) I had seen had offered me any help or referrals to treatment, except to see a psychiatrist. In fact, I had received more support from ER doctors than anyone else. At least they had prescribed me with medicine that helped control my movements.
At this point, I was improving but very slowly. I was back at work, but I was only able to work 20 hours/week. Working just those 20 hours was exhausting.
When I wasn’t working, I was resting. I had become a professional couch potato. At least that’s what I would tell people to help ease the awkwardness of seeing someone under 30 using a cane. 😉
Even reading, which I loved doing before FND, was too taxing on my brain a majority of the time. I had little to no energy to do anything but to work and watch mindless TV.
In the early spring of 2011, I started seeing a homeopathic doctor whose practice is to build you up from the inside so your body can heal itself. He did this by prescribing supplements and bio-identical hormones.
These helped improve my energy levels, which did help with the severity of the symptoms; however, I was still walking with a cane and only able to work part-time. During this time, I was able to increase my hours to 30/week. Progress!
Giving Mainstream Doctors Another Shot
A year later, my GP encouraged me to seek out help again from mainstream specialists since my improvement was crawling at a snail’s pace.
I agreed and went to another neurologist recommended by my GP. I also started seeing a therapist at the time to get a confirmation as to whether or not my symptoms were emotionally stress-induced, and to help me cope with this horrid condition I was now forced to live with.
The second neurologist my GP referred me to was great! He took the time to read through all of my notes, he researched all of my medications, and he ordered a few more tests. The first thing he said to me was, “Clearly, this isn’t psychosomatic.” After reviewing everything, he diagnosed me with dystonia caused by a medication interaction.
Remember when my FND symptoms came on, I was fighting a UTI from hell? The first antibiotic I received was Levaquin. (Side note: don’t ever take it unless you’re dying. Just Google “Levaquin lawsuits” and you’ll see for yourself, or you can watch this PBS NewsHour about it) Then I was prescribed Macrobid and finally Cipro (which is also in the same drug family as Levaquin).
My new neurologist found online that Straterra (a medication I was taking for ADD and had been taking for almost ten years) had caused dystonia in some patients. His theory was that the Levaquin had reacted with the Strattera and triggered the dystonia. Plausible.
As a result of his research, he wanted me to come off the Strattera to see what would happen. I was very hesitant because I had been medicated for ADD since I was 9. Before I entered college, I was re-tested for ADD to receive accommodations.
The day I tested without Ritalin, the therapist administering the test told me I should NEVER come off my meds. Something like kind of sticks with you, and I was afraid I wouldn’t be able to function without my meds.
My neurologist reassured me that there were other medications I could try, and he said many of his patients found that work was easier to manage without meds than school was. So, I gave it a shot.
Click Part II: OMG Improvement! to continue reading about my journey.