TRIGGER WARNING TRIGGER WARNING TRIGGER WARNING TRIGGER WARNING TRIGGER WARNING TRIGGER WARNING TRIGGER WARNING TRIGGER WARNING TRIGGER WARNING TRIGGER WARNING TRIGGER WARNING TRIGGER WARNING: JD I
At the age of 8, I was sitting in the GP’s office whilst my parents explained what had happened. I had been spending excessive amounts of time washing my hands, tapping things, scraping the back of my heels on the mantelpiece, repeatedly pulling my skirt up and down when trying to get dressed, whacking my t-shirts onto the floor and clicking the seams of them when trying to get dressed, drying my hands in a specific pattern (123,123,123,123,123 etc), and getting into a frenzy whenever I came across a perceived ‘old thing’. All of this had started virtually overnight. The GP suspected that I had Obsessive Compulsive Disorder and put me on the waiting list for Child and Adolescent Mental Health Services. How long!? Waiting lists are sometimes known for giving people a ridiculously long wait, but we couldn't wait to see a psychiatrist, I was already a shell of who I once was. My Nan kindly paid for me to skip the waiting list and see the psychiatrist at my local CAMHS privately. (Thank you Nan)
This psychiatrist confirmed the diagnosis of severe OCD. Whilst I was sitting at a desk at the edge of his office, doodling and colouring, he was explaining to my parents some of the thoughts and worries that I may be having. Confused, I just stayed silent and didn’t say anything. I wasn’t having any thoughts or worries before these compulsions. This confusion lasted for years, as almost every specialist I was seeing would ask “what would happen if you didn’t do the compulsion?” or something along those lines. Eventually I just started saying that I could get sick if I didn’t do a compulsion, but this wasn’t a fear that I was having, it was a genuine feeling. If I did not acquiesce to what my tormented brain ordered me to do, the physical sensation would accumulate and become almost unbearable. My compulsions were preceded by physical sensations, not emotions, worries, or thoughts. Years later, I learnt that this is called Tourettic OCD. The urge I was getting before a ritual or compulsion was the same sort of urge that I would get before a motor or vocal tic, except that for my rituals, it was more of an out of body sensation - a phantom tic.
This leads me onto the next part of my story. I would grimace, move my head, bark like a dog, and spell out “F, U, K, E”. This was my first coprolalia tic, my tic was attempting to spell out the F word, but I was too young to know how to spell it. I also had other symptoms such as oppositional defiance, sensory processing issues, episodes of acting like a toddler, and separation anxiety.
However, at this time it was almost as if the other symptoms were drowned out of our attention by the debilitating Tourettic OCD compulsions, the less debilitating symptoms were not our main focus. The Tourettic OCD seriously needed to be addressed, I had lost the ability to dress myself and walk up stairs in my home, and more than 8 hours of my day were consumed by compulsions. I was late to school on many days as my compulsions would take up so much time in the morning, I often didn’t get to sleep until the early hours of the morning as so much of my time in the evening was taken up by compulsions.
My psychiatrist decided that my case was too severe for Cognitive Behavioral Therapy, so he prescribed me a medication which did not really reduce the severity of my compulsions or rituals, but did make me a lot more confident and talkative. My parents decided that Cognitive Behavioral Therapy would be worth a try, so I saw a private psychologist who started CBT and Exposure Response Prevention therapy with me. The ERP element was where I worked to gradually decrease and cut down on my compulsions. For a short while, it looked like it was working, things would slightly improve. However, whenever things started to be improving, I would relapse again, and be completely consumed by the Tourettic OCD again. It also seemed that the therapy was making my rage attacks worse. This could have been because the physical urge wasn’t being released,so it would just explode out as rage attacks.
During my rage attacks, I had very limited, if any, control over my rational thinking and actions. Various psychological and behavioral measures were implemented, such as a sticker chart and a traffic light system. These were all useless. My rage attacks were involuntary, and discipline would not reduce or prevent them. It is also useless to try and reason with someone during a rage attack, when we have no rational thinking, that is a bad idea. We cannot process what you are saying and it is likely to make the whole ordeal worse. One thing that did help my rage attacks, however, was eliminating food dyes from my diet. When I was 3 years old, it was discovered that food dyes would send me into massive anger attacks. At the age of 10, when I was having frequent rage attacks, I was spending time with friends and going to the shop to get sweets, these sweets were the very thing that were turning me from the sweet girl that I was, into a girl who would hit, kick, scream, and hurl insults. There is quite a lot of evidence out there about how food dyes influence hyperactivity and the way some people act.
I eventually asked my parents if I could have a new psychiatrist, a female one this time. Thankfully I was able to get a new psychiatrist. The suspicion that I could have Tourette Syndrome was brought up to my new psychiatrist, but they immediately dismissed it, saying that my tics didn’t have enough impact on my life. At this point, my tics were affecting my walking, were causing self-injury, and were making it difficult to function in school.
I was eventually prescribed an antipsychotic medication which at first, caused a horrific reaction. I was crying inconsolably, shaking, constantly scared, and so sensitive to light that I had to wear sunglasses when looking at the TV. I felt like I was going to v*mit, and parts of my body were numb with limited sensation. My psychiatrist said it was down to stress, but after a few days of this nightmare, I was taken to the walk-in centre to see a doctor. I was shaking constantly in the waiting room, and looked some-what terror stricken. The doctor said that I should discontinue my medication, and once the medication was out of my system, the reaction stopped. However, me and my family felt that it wasn’t the medication itself doing this, it had to be something inside of the medication. I got prescribed the same medication again, but this time, a brand which did not contain the same green food dye. It worked. I felt my tics melt away day by day, and my Tourettic OCD vanished completely. I had no major negative reaction to the version of the medication without the green dye, but after some time it did contribute to me developing borderline high blood sugar levels. My psychiatrist always had to write which specific brand of the medication I had to get. Sometimes the pharmacists didn’t seem very happy about this, but it needed to be done.
At the age of 12 I was diagnosed with Autism Spectrum Disorder, although the diagnosis was a bit uncertain. Apparently half of the team who were assessing me thought I was autistic, and the other half did not. This is why the diagnosis was concluded by saying “We don’t know if Romy is autistic but we’re going to diagnose her anyway”. This led to years of me feeling uncertain about my diagnosis.
At the age of 13 I was doing really well, I no longer had Tourettic OCD, rage attacks and I only ticced for a few days or a couple of weeks in the year, most of the time I was tic free! The only symptom I dealt with which had any major impact on me was emotional lability, in terms of excessive laughter. It was quite awkward being the girl who would explode into fits of laughter in the middle of class, at the slightest trigger, unable to stop, sometimes for 10-30 minutes at a time or more.
One day I commented to my dad 'I have the random urge to sit on the floor'. I was 14 years old at the time and that urge stayed with me until I randomly sat on the floor outside of my computing class. I didn't think much of it, but within a few days my tics had escalated. By the evening, I was swearing and yelling inappropriate phrases, 'oh my goodness, I hope this doesn't happen in school' I thought. Guess what happened? For most of the next day at school, I was completely fine, but by lunchtime I was swearing and yelling very loudly, and being followed around by some girls who wanted to get a glimpse of me uncontrollably blurting out profanities. In my next lesson, I was desperate to censor myself, and I was trying so hard to whisper my outbursts instead of yelling them. My efforts were futile, it didn't work for long.
The Special Educational Needs Coordinator emailed my dad saying that I needed to go on more medication. I wished that they would know that it isn't that simple, medication was not going to eliminate all of my tics. I had an appointment with my psychiatrist and my dose of medication was increased. For 4 days there was an improvement… and then they were back to being severe again. These tics are very stubborn it seems.
Over the next 2 years I tried to adjust to living with these severe tics. I was yelling phrases, swearing, dropping to the floor, doing inappropriate gestures, hitting myself, hitting out at others… you name it. There were times when other students would have their eyes glued to me, lured in by the noises I was making and too intrigued to turn away. I'm not sure if I should have felt like some sort of weird celebrity that everyone was desperate to see, or a caged exotic animal in the zoo which everyone stared at with morbid curiosity.
A lot of the time, it was like my mind was doing a constant risk assessment. My internal monologue looked a bit like this…
'Don't sit next to the radiator, you could burn yourself if you tic and touch it. Don't sit next to that window, you could tic and smash it. Don't sit too close to that bunsen burner, you could tic and put your hand in the flame. Don't go near that display, you could rip it. Don't sit near those ornaments, you could throw them". You get the idea.
I had to have countless accommodations put in place for me at school. These included having half days on some days, having extra time and a separate room for exams, being able to use a laptop to write, being able to leave class and work in the pupil support centre, being able to skip the lunch que, being able to leave class 15 minutes early, being able to use other people's notes etc. I was really lucky that my school was incredibly supportive, though I did have some run-ins with some misunderstanding members of staff. One of those was a french teacher who sent me out of class every lesson because of my tics. People with tics should never be sent out for ticcing. Other than that though, my teachers were lovely and supportive, so I am very grateful!
When I was 14, I attended a Tourette's camp up in Scotland for the first time. As soon as I got there, it felt like home. Suddenly I was surrounded by people who just understood me, and had lived through similar experiences. It was like I had found my tribe, a family I never knew I had. I grew in confidence after meeting them and knew that I wasn't going through this alone. The people at the camp encouraged me to seek a formal diagnosis of Tourette Syndrome. For the past few years, I had been self-diagnosed. Getting a formal diagnosis didn't seem like a priority at the time, until those at the Tourette's camp pointed out that I would have to tell the DVLA about my condition when I get a driving licence, and when my school told me that I needed a formal diagnosis to get exam accommodations.
Months later, I had an appointment with a pediatrician specializing in neurology. Within about 20 seconds of me being in there, they agreed that I have Tourette's. My tics at the time were morphing the doctor's name into a profanity, and had tried to clear his desk. Thanks to the formal diagnosis of Tourette Syndrome, I could get the exam accommodations I needed.
A few months after the diagnosis, my tics intensified slightly. I developed sensory tics, which are tics without a movement or vocalization, only a sensation. It was horrible to say the least. I felt an electric-like current going up my fingers, right down to out of my toes. I was laying on my bed, crying in distress, wishing for it to stop. For me, the sensations that came along with tics (premonitory urges) and sensory tics were so much more distressing than the motor and vocal tics themselves.
The school SENCO held a meeting where they explained that they are considering me for a referral to a Medical Pupil Referral Unit. All I had to do was get my psychiatrist to sign the form. I was told that I would be doing my core subjects at the Medical Pupil Referral Unit, but could come and do my chosen GCSE subjects at my school. I didn't see how this would work with the timetables though, so I felt as if they may have wanted to fully integrate me into a Medical Pupil Referral Unit.
I had a decision to make… not about whether or not I was going to go to the Medical Pupil Referral Unit or not, that could wait until later. I had to decide whether I wanted to go back to Tourette's Camp, or not. This would usually be an easy decision - 'yes!' But seeing how much my tics had intensified, I was becoming cautious of anything that could make my tics worse or make me pick up more tics, and these are things that can occur at Tourette's camp. However, despite the worries, I went. I went to the camp and I am eternally grateful that I did, it changed my life completely.
At this event, there were often workshops, and at this specific time there was a workshop being held which I didn't know at the time could improve my quality of life beyond what was imaginable. It was about tic triggers. The lady who ran the workshop explained that many different things could trigger / exacerbate tics. These things included certain foods, certain sensory input, and more. One thing which I learnt from the workshop is that light sensitivity can trigger / exacerbate tics for a lot of people. It was quite funny actually, my dad turned the light switch off in the middle of the workshop, and immediately, my tics calmed. We learnt that certain tints of glasses can help certain people, and that quite a lot of people with Tourette’s have Irlen® Syndrome. Irlen® Syndrome is a condition associated with light sensitivity and reading difficulties, I do not have Irlen® Syndrome, but I have light sensitivity and some traits of it.
Another thing that was learnt from this workshop is that certain food sensitivities that people may have, such as a sensitivity to dairy, gluten, cheese, chocolate, sugar, food dyes, aspartame, egg, corn, nightshade vegetables etc, can trigger and worsen some people's tics. This could be due to the histamine / immune link to Tourette Syndrome and tic disorders. There are quite a lot of personal accounts about this online, such as on the ACN latitudes website, and in the books 'Natural Treatment For Tics and Tourette's' and 'Stop Your Tics By Learning What Triggers Them'. I discovered, after consuming a large amount of cheese, that cheese was a trigger for my tics. This is how we found that out by chance. However, after this I realized that it wasn't just cheese that exacerbated my tics, but anything that contained cow's milk / dairy! After eliminating dairy, my tics decreased dramatically. I was able to come off both my antipsychotic and antidepressant medication with no return of the tics, Tourettic OCD, or rage attacks. It seems like a miracle, but it isn't as far out as it may seem, as there have been many studies showing how diet and food sensitivities can have a huge impact on other conditions which affect the brain, such as depression and schizophrenia. Some people do not understand why so many people with tics see positive results from the elimination of food sensitivities, some people think that because it is a genetic neurological condition, food shouldn't have an impact? This assumption is incorrect. There is a saying that goes like this - 'genetics load the gun, but environment pulls the trigger'. This means that although TS is genetic, certain factors, such as food sensitivities, may make the symptoms worse. After my dramatic reduction in tics, there were still some issues in the school environment. Something was still triggering my tics in school.
My tics were always worse in public. People assumed that this was because of feelings of social anxiety, but I was not socially anxious in the slightest. I would tic loud and proud with confidence, without caring what anyone thought, so anxiety was not the culprit here. This is where the information on light sensitivity came in handy. All of the public places where my tics exploded, had fluorescent lighting. By chance, I found that dark amber-rose tinted glasses caused the urge to tic to melt away, so my tics decreased when wearing them. Black or grey tinted sunglasses didn't do it for me, it had to be a specific tint. After months of wearing the sunglasses, it was as if my brain had adjusted to no longer need them anymore. After this I still adhered to my special diet which eliminated my food sensitivities, but after some time I was free from the sunglasses, off all of my medication, and had been discharged from CAMHS, and my tics were hardly ever present. I no longer had any Tourettic OCD or rage attacks.
I did not need to go to the Medical Pupil Referral Unit, I passed my exams and got into the further education course that I wanted to do, and the SENCO said 'this is amazing coming from the girl who just a few months ago couldn't hold a pen'. For my first year of my Health and Social care course, I still hardly ticced. There were only a few days where I did, and I was still completely medication free. I also had no OCD symptoms.
Things were looking bright for me… but then they changed again. At the same time as having a throat infection, I was plunged into a waking nightmare. It started with me feeling ever so slightly numb and dazed. Within a few days I felt like I was stuck in a dreamlike state, my thoughts were starting to drown me and I couldn't stop them. I had developed various subsets of OCD at the same time, plus a bunch of other symptoms.
I was having thoughts which I knew weren't my own, they were saying things that I really didn't want them to say. I stayed awake for most of the night, researching 'psychic attack'. 'Could this be why I was having such strange thoughts?' I wondered. I was clicking on most of the web pages multiple times, not because I was compelled to do so, but because I would have no memory or recollection of clicking it, even though I had done a few seconds prior. The next morning, I messaged my friend, and asked if he thought I was being psychically attacked, he said no. Thank goodness. I remember having two streams of thoughts, a 'good' one, and a 'bad' one. I went and sat in a bush and began praying and meditating, hoping that whatever 'bad' entity was influencing my thoughts would go away.
I lost motivation to do things I loved… I was no longer excited to post content on Tourette's awareness, which was something I was extremely passionate about at the time. I was plodding along in my dreamlike state, looking like a zombie. Yes, people did notice and they did ask about it. My mind was filled to the rim with ruminations galore. I was starting to doubt everything and ask myself deep questions about the world, which I felt that I needed to answer. 'Why do we have gratitude?', 'What if I don't really love my boyfriend and love someone else?','What if I accidentally cheat on my boyfriend?'. These were just a few of the questions arising from the OCD.
I experienced episodes of 'zoning out' and losing awareness of what was going on around me. It was as if I would forget that I existed, like I was asleep for long periods of time, but I was very much awake. However, when I would snap back into awareness, it was extremely bizarre as I would only realize then that I had been zoned out, and I would have no idea what had been going on around me when I was zoned out. I would also realize how strange I must have looked standing and doing nothing, when I was being supervised at my work placement and was completely oblivious to the people in front of me whom I was supposed to be helping.
Within a couple of days, this nightmare escalated beyond belief. All of my energy and focus had to go towards moving one part of my body, and my coordination deteriorated greatly. I would try my hardest to reach out and grab something from in the cupboard, and I would miss. My limbs simultaneously felt like they were made of lead, and jelly. It became hard for me to eat as I couldn’t hold the fork properly, I was holding it at a very peculiar angle, as it was difficult for me to sense where certain parts of my body were. I also had an episode where I temporarily lost the ability to swallow, which was terrifying. Thankfully though, my ability to swallow came back within 10-20 minutes. Most of the sensation in my body dulled, starting from one side of my chest. It was the strangest feeling ever, I would touch my skin and wouldn’t sense it, but I had the sensation of having bugs on my arms, even though I knew there weren’t really any there. My knee joints ached and my pupils were extremely dilated and didn't constrict when light was shone in. My face looked gaunt. I was eating a little bit less than usual, as the feelings of anxiety had killed my appetite.
At this point I was convinced I was going to die. I was just absolutely terrified.
7 trains of thought… that is how many trains of thought I had counted. Each train of thought was filled with various different involuntary thoughts. One of them had loud sound crashes… I didn’t know that thoughts could be loud like that! I started looking at some artist’s pictures online to calm myself, but then the visions of these pictures would keep randomly flashing up into my mind’s eye as a mental tic.
My intrusive thoughts would make me think the worst phrase I could possibly think, whenever I looked at something or someone, my mind would fill with hateful thoughts that go against what I really believed. I felt like my mind was poisoned.
There were times when I felt like an evil person who had let everyone down, there were even times where I felt like I was a different person, even though I knew I wasn't. The sadness was quite new to me… for years before this I was extremely happy most of the time and had an incredibly optimistic outlook on life, it was rare for me to be upset. I felt like people were going to be disappointed or angry at me for my symptoms, and I felt like it was my fault. There were times when I felt extremely emotionally numb and hollow, this feeling of being hollow and having no emotion made it feel like nothing in the world really mattered, that nothing really had any point.
The intrusive thoughts from the OCD were accelerating, I was having an intrusive thought every second. My body began burning up with fear, quite literally, that is what it felt like. My terror was at a level I never thought was possible, as I was pretty much convinced that my intrusive thoughts were going to become real. All my effort was going into affirming over the intrusive thoughts, because in my head, that seemed like it would make it less likely for them to manifest into reality. I couldn't keep up. I couldn't affirm over them all. I cried to my mum, saying that I wanted to be put into a medically induced coma until this ends. I couldn't bear to be responsible for anything bad occurring. At the time, my mind was telling me that I would die, and that all the entities in the afterlife would be disappointed in me, for contributing to the downfall of humanity. I remember trying to watch a film to calm me down, but I didn't take any of it in, due to constant intrusive thoughts, intense brain fog, and dissociation. I would try to watch a comedian in order to cheer myself up, but again, my head was filled with a stream of random thoughts, and unwanted intrusive thoughts, and I was hardly present, so most of the time I had no idea what the comedian was going on about.
My sleep was greatly affected. During the worst of this ordeal, I could only sleep 3 hours at a time. After this, I would awaken after hearing my thoughts arguing in my sleep. Once this passed after the worst of this flare, I still had issues falling asleep. I often wouldn't be able to sleep until the sun had risen in the morning. Thankfully, antibiotics eliminated my sleep disturbances.
I had the onset of hyperactivity and difficulties paying attention, to an extent I had not had before. My thoughts were racing and I was very physically restless at times. I struggled to take in what I read as I would just skim read, and my ability to focus on a task in general diminished. I struggled to type due to my inattention, so I used speech to text to get my assignments and homework complete. I did not have the ability to go over it and check for spelling errors as I could not focus that well, so the teachers just had to accept it as it was. I had minor issues with mental hyperactivity in the past, but NOTHING like this. My severe tics also returned, after me hardly ticcing at all for around a year, and my tics have not passed since.
Due to the onset of these varied and terrifying neurological and psychiatric symptoms, and their correlation with a throat infection, it became clear that I have PANS /
PANDAS. This was an interesting revelation, once I accepted that I have PANS/PANDAS, everything made sense. The brain fog, the OCD, the tics, the loss of sensation, and even the separation anxiety I had as a young child. It all began to make sense.
This then made me wonder… have I had PANS/PANDAS all along…? When the severe Tourettic OCD exploded when I was 8 years old, my family wondered whether I may have PANDAS. 2 years after my onset, I had a blood test to check for Strep antibodies, as Streptococcal infections are the infections associated with PANDAS. It came back negative. We assumed this meant I didn't have PANDAS, however now we know that I may have had the test too late. 2 years after the onset of the Tourettic OCD may have been too late for the antibodies to be detected. As well as this, there is a possibility that it may have been another infectious illness triggering the symptoms, which would be PANS. However, around the time of my major flare at age 8, or just before, I remember having what I termed a "white ice-cream lump" in my throat. It was diagnosed as a bacterial throat infection, but I do not think they tested me for Strep at the time. For a while, I also thought that my symptoms not responding to antibiotics when I was younger meant that I may not have PANS/PANDAS, however now I know that not everyone with PANS/PANDAS responds to these, and I may have just needed a different type of antibiotic at the time. Thankfully, at the age of 17, some of my symptoms did reduce with the use of antibiotics. There is one bizarre thing about my experiences which is different from most people's experience with PANS / PANDAS, it is that I did respond to antidepressant and antipsychotic medication. Quite a lot of people with PANS/PANDAS report that they do not, but a small percentage do and I seem to be in that small percentage.
I likely have had PANS/PANDAS all along… over my journey I have been supported to find lots of little clues as to what contributes to my neurological and psychiatric symptoms. Sometimes it does take that sort of detective work to find answers, but it is totally worth it.
After the symptoms from my flare at age 17 reduced, I felt the most intense feelings of gratitude. I felt extremely lucky to be alive and to be free from the worst of it. In the midst of all of the chaos, I had transformed as a person. I was a bit more empathetic, more compassionate, and more aware of who I really am.
I still have some symptoms, such as severe motor and vocal tics, episodes of reduced muscle tone, slightly reduced sensation in certain parts of my body every now and then and some mood changes, and I am now back on my antidepressant medication, but things are so, so, so much better than they were when I was 17 years old, and are so much better compared to how disabling my symptoms where when I was a child.
Everything beautiful in life, I owe to my pain. Let me explain, if it wasn't for this eventful, confusing, and sometimes painful journey I have been on, I would not have come across some of the most beautiful souls who have inspired me and changed my life beyond measure. If it wasn't for the struggle, I wouldn't have the sense of purpose that leads me to help people in the way I do now. I have a Youtube channel, a website, an Instagram page and a TikTok page where I raise awareness of PANS / PANDAS, tic disorders, OCD and Autism, and support others with the conditions, and I am planning to start a business soon that has been inspired by the struggles I have faced. If I didn't go through what I went through, every single aspect of my life would be different. So yes, I endured a waking nightmare and I didn't know if I would get out of it, but I did. I did and it all paid off. I learnt lessons, I realized why we shouldn't be taking things for granted, and I blossomed into who I am today. Nothing would be the same if it wasn't for the struggle and pain. So after all that, I can say that I am grateful. My struggle has caused me to be a misfit at times, I never had the time nor the ability to 'normalize' or conform to society's standards. That is such a HUGE blessing in itself. I never want to be 'normal', I am free, I can be me. That is a gift. I know this sounds like some overly inspirational stuff, but I don't intend it to be that way. I do intend to show that things can get better as I want to offer people hope, and I also intend to show that certain difficult experiences in life can be used to grow and help others and can be worthwhile. I am extremely lucky that my struggles have paid off and have been worthwhile for me, and I want others to know that it can happen for them as well. However, it is important to note that there are people who struggle for years or most of their life, so to them the struggle is unlikely to seem worthwhile. In these cases there may be a more important lesson to learn, one of persistence, courage and strength - the ability to keep going when life gets tough and endure the struggles that make you stronger, and the ability to keep going and facing each day even though it is difficult - that is true strength.
Disclaimer: This is based on my own personal experiences as this is my story, but everyone’s experiences will be unique. The information in this blog post is NOT to be taken as medical advice, as it is for educational purposes, but I hope you learn something!