Morning after the horrendous day, I went to the clinic with the help of my parents. During the treatment, I found that every time I tried to reposition my body to correct my posture, I had convulsion and my body would start shaking. Spasm around the jaw was most severe. Dr Lee said after wearing CBA for up to an hour, it was important for me to continue wearing OBA and do the 4 standard exercises (known as full body exercises). He also emphasized the importance of keeping a positive mind because it helps to recover faster. He also told my parents to prepare healthy meals (balanced nutrition with brown rice) and continue with herbal medicine. After 2 sets of treatments that day, I returned to the flat and I tried to do some exercise. However, I had no energy at all and it felt as though my muscles did not have any strength. This made me doubt the treatments and I felt more depressed. During CST my body was shaking for around 2 minutes then afterwards it was fine. I noticed that the more severe the spasm became, the more anxious I got (or the other way round – it was not clear which came first but one thing that was definite was that both affected me together).
I woke up early in the morning but having only slept for a couple of hours I was very tired. During the night I wore OBA which helped to relieve the pains but for some reason it made muscle spasms worse. Quite often, my arms, legs and head were shaking and muscles around the jaw were moving constantly. That morning, I had to go into town to get a CT and Xray done at medical centre specializing in scans and my parents came with me. It seemed that the clinic have been dealing with the medical centre for a while as they knew exactly what to do without me having to explain everything. The Xray were taken on the face, neck and torso, once without OBA and then another with OBA. It was same for CT scans. It did take a while as they took at several angles and as tired and irritated as I was I had to lie down in the waiting area on the chairs. After 20 minutes, they gave us a CD with Xray and Scan photos and told us to give it to the receptionist at FCST clinic.
We arrived back at the clinic around 11 a.m. and I saw some doctors in the treatment room who were participating in FCST professional course run by Dr Lee himself. I was invited into the room and Dr Lee showed me the Xray and CT scans from his computer. He explained that my cervical vertebrae (the top of the spine) was distorted which could be clearly seen, my neck seemed to be tilted to the left compared to the normal spine. The CT scan also showed that the Atlas (the first vertebra) was tilted to the left. It was very useful to see distortion of the spine from different angles.
Then he proceeded with the first treatment of the day but after the first CBA (custom made intraoral appliance) I suddenly had a non epileptic seizure, causing uncontrollable shaking of the whole body which made it impossible to sit down. The nurses helped me to one of the beds where I lied down and continued shaking. The level of anxiety was at peak, probably the highest I have ever felt; it was more like a panic attack. After 10 minutes I stopped shaking but I was still nervous, hyper tensed and exhausted. It was impossible to get further treatments that day. We went to a nearby emergency unit to see if there was anything to reduce the anxiety. The doctor suggested taking sleeping pills to get some sleep but I was afraid that I might never wake up (might sound quite drastic but I’m sure people suffering from anxiety issues will understand how I felt then) so I refused. I had drips put in for nutritional supplement as I was not eating very well that week and after I calmed down my mother managed to convince me to take some sleeping pills. Thanks to the pills I managed to get some sleep during the day and felt a lot better by the evening. Dinner was my first meal of the day (which my mother kindly prepared for me) and after that I had herbal medicine provided by the clinic. It did not taste very nice unfortunately but I followed the instructions from Dr Lee. During the night I tried to sleep again but found it quite difficult because of the persistent muscle movements (not the shaking, just the sensations) and I was still quite panicky.
03/10/13 (First treatment)
The morning after, deprived of sleep, I was feeling very exhausted and anxious about the treatment that I was about to receive. I had worn OBA throughout the night and the pain seemed to have decreased significantly. However, the strange movements of the muscles around the jaw (spasms were mostly around the jaw area with similar sensations in my limbs too) were still tormenting me. The clinic was right next to the flat but I still could not manage going to the clinic without my parents’ help.
I arrived at the clinic and the staff seemed very busy and occupied with their work. At first, I thought they were not very attentive but later I realised that it was because I was one of the patients with milder symptoms. They were used to having patients who struggle with walking, have shaking in different parts of the body, have seizures and make strange sounds.
The staff at the front desk kindly introduced the treatment procedure and available treatment package options. My situation was so desperate that we had not even given financial matter a priority. In all honesty, it was not small amounts of money but my parents decided it was worth paying considering the length of time already wasted on other treatments. I chose the 3 month package which consisted of 30 treatments (* we did not realise until later that it meant 30 treatments to be used within 3 months; I used all the 30 treatments in 20 days as I was staying near by the clinic and was able to receive several treatments in a day). That day, we also bought a CST pillow so I could use it in the flat too.
After choosing the package, I was asked to fill out a form for personal details and medical history. Before the signature at the end of the form it also stated that I permit the clinic to use my data for clinical data collection (this is an option but the price of the treatment is higher if one chooses not to). Then, they measured my pulse and blood pressure. During this time, the muscles around the jaw were still moving uncontrollably and I had to control my mind as I was becoming slightly impatient. Afterwards, a member of staff later led me to a room with a computer and politely asked me to tick all the symptoms that related to me (by this point I was probably looking quite irritated… but I couldn’t help it). I had to score each of the 200 or so symptoms from 0 – 10, 0 being none and 10 being the most severe. I had 63 symptoms and for many of them I gave 10s. The list of symptoms was printed out and was given to Dr Lee. This list was also used for monitoring my progress – I was asked to to give each of them a score everyday (by the time I had last treatment most of them were down to either 0 or 1). It was also useful to discuss with the doctor about certain symptoms which effected me on particular days.
There were more patients than expected who arrived at similar times and waited in the waiting area. Then we were called by the nurse and we all entered the room at the same time. It was quite strange for me but other patients seemed to be used to it. It made me quite nervous but I sat down and watched other patients receiving the treatments.
The age of patients varied from as young as 5 to elderly in the 70s and they all suffered from chronic disorders. There were quite a lot of kids with Tourette’s (also known as Tic disorder) and ADHD. I also saw a guy in his 20s suffering from schizophrenia. I did not understand at first why all of us went in the treatment room at the same time but it soon became clear; although the symptoms were different, the treatment method was the same. Dr Lee asks each patient what has improved and how the patient has been feeling since the last treatment. One patient in the same room was suffering from Parkinson’s and when she was asked, she said she now walks without falling over. She still had mild shaking on her hands but she said a month ago she had shaking on her legs too which prevented her from walking. Dr Lee asked her to walk to the back of the room and she did so like a normal person.
The first part of treatment consisted of balancing the TMJ at ‘zero point’ (which means at precision; Dr Lee aims to balance TMJ as precise as possible going down to the 0.05mm range – This method is unique to the clinic and will explain in detail in upcoming articles in the blog). He does this by putting in very thin pieces of paper which the patient bites on both left and right side. As soon as the TMJ is balanced at ‘zero point’ I noticed that immediately, the pain disappeared and muscle spasms stopped. Subsequently, I lied down on the treatment table to proceed with alignment of upper cervical vertebrae.
Before he proceeded with alignment he checked again to see whether the TMJ was at zero point with restricted cervical rotation test. He rotated the neck left and right but on the right side the turning was limited which meant that TMJ was not quite at zero point. He then put another sheet of paper (0.05mm thick) on the right side and when he tested again the rotation both to the left and right became smooth (meaning the TMJ is balanced at zero point). Next, he went ahead with alignment of C1 and C2. With the pile of papers at both sides still he went ahead with creating CBA (Cervical Balancing Appliance) using putty material which clearly needed to be handled by an experienced practitioner. After that, Dr Lee told me that the procedure he had just gone through was FCST which was developed by him. Then, I was told to follow the nurses for 7 other therapies (too long to explain in detail here but the rest are described in the Treatment dropdown menu).
Although I now understand what he was trying to explain, at the time I was so preoccupied with the symptoms that I was experiencing, I was still sceptic and doubtful as I did not comprehend fully. After the first day of treatment, pain decreased but the right side of my jaw was still moving quite intensely and spent the night awake again. Anxiety was still at its peak and I could not help thinking that maybe the treatment would not work on me.
You have probably already sussed out that I am not a very good writer (I am very well aware of it). In fact, I have never written anything longer or more interesting than my dissertation which was 7000 words on the topic of accounting frauds. However, I still wanted to share my experience (despite the embarrassment!) to other Dystonia patients in as much detail as possible so it can be of help, perhaps not to all but to at least some. From this post onwards I will write about my daily struggles during the treatment. I must say it was not an easy process; the battle with myself was possibly the most difficult part to overcome but after I went over enough hurdles it became easier and easier. I spoke to many other patients and they go through exactly the same, the only difference being the time it takes to overcome the obstacles. So here it goes – my diary from the first day at the clinic.
02/10/13 (First consultation)
I probably felt a little uneasy at the clinic at first as anxiety made it difficult to cope with an unfamiliar environment. Dr Lee and the staff at the clinic had kindly waited for us which I feel grateful for when thinking back although my mind was elsewhere at the time. He spent 20 minutes on explaining the importance of TMJ, how TMD is caused and how TMJ is connected to Dystonia and other disorders in a way that was easy to understand with diagrams and illustrations. He then went through various tests to identify whether I had TMJ imbalance and distortion of the first and second vertebrae. It was clear that I did in fact have both which was apparently causing Dystonia. After the tests, he gave me one of the intraoral balancing appliances called OBA (Occlusion Balancing Appliance) as I had Class 2 malocclusion. Immediately after wearing the appliance I was 70% free from pain and I also felt less anxious. I became excited that there was finally a ray of light.
Dr Lee told us that he had arranged a studio flat next to the clinic for us to stay and to come back the next day to decide on treatment plan and proceed with the treatment. The flat was quite small but modern and fully equipped with air conditioning, washing machine, fridge and kitchenware. The time difference between the UK was 8 hours and I struggled to fall asleep. I did dose off for little while but most of the night was spent on regretting the past and blaming myself for being so arrogant. I also worried whether this treatment could lead to recovery or if I might have to face the possibility of living with Dystonia forever. During this time, worrying made the spasms worse and I spent the rest of the night wide awake.
* Scroll down to the bottom and start from the first post to read from the beginning
Light at the end of the tunnel
It occurred to me that these strange muscle movements must be related to TMD because the sensation and pain was mostly located around the jaw area when it reached the tipping point. I consider this as lucky because if the spasms happened somewhere else I would not have linked the two so quickly.
In desperation, while I was still in A&E, my mother decided to email Dr Lee asking advice on two important points: 1) whether the symptoms I was experiencing were related to TMD and 2) if so, whether it was possible to treat it here if we bought the available medical devices that he was using at his clinic. Within hours, he replied and said that he suspects Dystonia and advised to stop using the dental splints. He told us that for over 10 years when he first became a doctor he had used dental splints for treatments but he found that long term use led to negative effects. He said that for the last 10 years he has been using intraoral devices designed by himself. He also mentioned that the devices are helpful but recommended treatment at his clinic for a few months for faster recovery. It was the most helpful answer that anyone had given to me and what he said made sense. It was the first time I had ever heard of Dystonia but at least I now knew what the spasms were.
Unfortunately, even after finding out that Dystonia was not life threatening , my body and mental state was still on a rocky ride. My mum sent another email while I was in A&E saying that we will be going for treatment. Thankfully, he sent a reply listing temporary therapies (CRI and CV4 techniques of CST) that will relieve some symptoms. 1 October 2013, I was discharged from the hospital and we tried the suggested therapies using different equipment at home. Although it did not resolve the spasms completely, it improved a little. The same day we booked flights for that evening and we headed to the airport with the help of my friends. The ten hour flight felt like the longest journey and what was worse than the pain was fear of the unknown. I told my mum that I was sorry for being so arrogant and thanked her for all her help in case something went wrong and I could never see her again. I think the fear had gotten the better of me.
Thankfully, we landed and I was still alive . We took a taxi from there and travelled 2 hours from Incheon airport to the clinic. It was about 7pm when we got there and although it was past closing time, Dr Lee had kindly waited for us. He had also arranged a studio flat for us to stay next to the clinic.
In our first consultation he began by explaining how TMJ Dysfunction leads to other disorders including Dystonia and various tests to diagnose TMD (other than xray) for 20 minutes. Then he spent a further 10 minutes to carry out the tests and it was clear my TMJ was out of balance. Afterwards, he gave me a type of mouth guard (made of flexible silicon material) called OBA (Occlusion balancing appliance) which is one of the standard type devices. As soon as I wore it, I noticed I felt some difference and immediately he asked me this question “Out of 10, how much has your pain decreased by?”. I answered “7”… Straight away, I had to double check because just seconds before wearing it I was in so much pain that I could not help myself from frowning. I had seen videos of other cases beforehand and I noticed that he asked every patient the same question immediately after wearing the device. In the videos they would always answer between 50 – 90%. My first thought after watching them was, they made the videos so they could advertise the clinic and must have edited them carefully to make it look convincing. But, when he actually asked me 7 out of 10 was my definite answer.
On that day, I finally saw a light at the end of the tunnel and I was about to embark on a journey towards hope.
(The rest of the story is carried on in ‘Diary during Treatment’)
I will have to begin this chapter by mentioning my mother. I have never been a mum myself so I have no idea about maternal affection or responsibilities. However, I am pretty certain that motherhood is the greatest yet hardest job anyone can have. Without my mum I don’t think I will be writing this blog right now.
April 2012 was when I found out about TMD and I told my mum about it. Fortunately, she did not doubt it once and said to me “From looking at the symptoms I think you are right, you just need to find the right treatment”. However, I thought she was just saying it to comfort me and trying to not cause an argument as she was busy with work. So I never mentioned it again and carried out research on my own and found that there are various self treatments such as facial massage, stretching exercise to relieve muscle tension and meditation to reduce stress and anxiety. I also went for sports massage therapy some weekends which I found more helpful than physios. Whilst they were helpful, I had to repeat them everyday but working full time and studying at the same time, I was becoming worn out. I was fixated on the idea that I could get better by trying self therapies but as time went by I became more depressed by the fact that I could not resolve it myself. I guess I only have myself to blame for my own arrogance but it was also due to the fact that I did not want to go through a battle with the NHS which I was almost certain would make me depressed even more. My mother became more concerned that I was becoming more obsessed on trying different therapies.
I finally gave in and went to the GP in March 2013, with a long list of TMD symptoms that I was experiencing. He did not seem to be very familiar with the condition and told me to come back a week after so he can give me a clearer answer. A week later, I went back to the GP who completely ruled out TMD as a cause and instead he suspected that I had arthritis… The undesirable yet expected result made me so angry but I had to restrict myself from shouting at him because I knew whatever I could have said was not going to be heard as he was the doctor and I was just an ordinary person with limited medical knowledge. I immediately sensed that arguing would not resolve anything and left. Two days later, I had to resort to going to a private dentist (which was costly) and finally, I was diagnosed with TMD. After the consultation I decided to go ahead with treatment using a dental splint. At this point, I took a further 3 months off work because the pain was unbearable and I was mentally unstable. The splint which was initially meant to take a week to fabricate, took 3 weeks. It felt more like 3 years as patience was running out and I wondered why luck was never on my side.
Anyway, at last, I was given a device that could relieve pain that had tortured me for so long but I was warned that is not effective on all people. I was told that I could use it for up to a year and was recommended to wear it at night but also during the day if I wished. The first few weeks of wearing the splint I certainly did notice slight improvements – less headache, neck and shoulder pains and improved digestion. I was so excited that I was going to be “normal” and that it was just a matter of time before the splint was going to sort me out.
During the 3 months leave, my mum tried to convince me not to just rely on the dental splints but to try medical practices that specialise in treating TMD. To my surprise, she had done her own research since I had told her the year before and gave me a list of practices she found and thought may be worth trying. She pointed out Dr Youngjun Lee’s clinic in South Korea and said it has the most testimonials as well as video cases so she suggested getting treatment there. I had also come across it whilst doing my own research. However, I trusted that the dental splint was going to fix my jaw and decided to concentrate on my exams I was sitting in July.
I did not think much of it at the time but a few more weeks later, the splint broke in half and I had to get it repaired.
Whilst enjoying freedom from some of the symptoms I also started feeling unfamiliar sensations – sudden spasms in my limbs. They were not painful nor were they serious at first so I ignored them and took it as signs of getting better. I then took my sister, who had very similar symptoms as me and was still making routinely visits to the GP, to the same dentists from where she was also given a dental splint. At the same time however, the frequency and severity of spasms (these spasms were just sensations rather than visible movements) were increasing and more strange things cropped up. As time went by, I started experiencing vertigo (similar to dizziness but more severe), vomiting and blurred vision. Often, walking was difficult because it felt like the floor was moving around and lack of productivity at work was making me feel down even more. The life I was living was completely different to what I had imagined a few months back. By September 2013, the strange muscle movements reached the jaw area and became permanent. It was then that I finally realised there was something seriously wrong.
All of a sudden, I was getting panic attacks, hypertension and sometimes difficulty breathing. Anxiety, together with depression had reached an intolerable level. It was really difficult to explain to other people that I had strange movements of the muscles because it was not visible to other people. I still went to the GP again but all I could receive was yet more prescriptions for painkillers and antidepressants with advice to rest at home.
At one point, my mother called the accident and emergency unit crying after seeing me go through a panic attack which almost led me to faint. She told them about diagnosis of TMD and that she suspects current symptoms are linked. As predicted, they ruled it out and said it only affects the jaw joints so it has nothing to do with what I was going through. However, they still kindly took me to the hospital because the condition was quite serious. Lying on the hospital bed, I waited a few hours to see the doctor during which the panic attack and muscle spasms seemed to have died down a little. When the doctor saw me, she said the symptoms appear stress related and gave me more painkillers. I timidly mentioned TMD and although she was sceptic, she advised me to see a specialist before discharging me.
I was so lost because I had already been to a specialist and things had just turned out worse. By this time, I was sick of painkillers and just wanted someone to tell me what went wrong. As the clock ticked away, it felt like I was falling into a great black hole of death. It is a feeling that only sufferers could possibly understand the extent of.
In 2009, after my second year of university, I was lucky enough to secure a summer internship at a bank where I worked full time for 2 months. Not long after I started working, the nagging symptoms began to haunt me one by one and gradually became serious. To name a few, I had constant, severe pain in my neck and shoulders, indigestion, Irritable Bowel Syndrome, dry and tired eyes, headache and a numb feeling of the face. It almost seemed as though they were competing to see who could torture me most and none of them wanted to lose out. When someone asked me how I was feeling, my answer always included the word “Tired”, some people even came up to me and said I looked knackered. Personal life after work was unthinkable because I needed to spend the evening resting to be able to cope the next day. The weekends were mostly spent on trying new therapies to help relieve the symptoms which included chiropractics, acupuncture, yoga and sports massage therapy. They were useful but sadly, the effects were only temporary.
After graduating university in 2010, I managed to get a job in an accounting firm and started working as an auditor. Due to the nature of the job, most of my working days required travelling, working long hours and studying in the evening. The first few months were manageable but as time went by it became more difficult to cope. Without invitation, new guests joined the list of symptoms – dizziness, numbness in my hands and fingers as well as abdominal pain. They started to attack my psychological state too. I became depressed and easily stressed.
I made regular trips to the doctors and each meeting comprised of a different theme – one consultation would be on headache, a few weeks after it would be on abdominal pain and so on. After every visit, I would come back with prescribed drugs such as pain killers, tablets to enhance digestion and antidepressants. Unfortunately, they didn’t make the symptoms go away completely.
I even took 3 months off work in 2012, to try different treatments abroad which seemed to be more helpful at first but again the effects were not long lasting. Towards the end of the 3 month treatment, I heard the practitioner murmur “I wonder if this is TMD…” admitting that the treatment might not have benefited me. When I came back to the UK, I remembered what she said and decided to do some research. I found a website which provided quite a long list of possible TMD symptoms and slowly going down the list, I realised I ticked almost all the boxes. I probably had the biggest eureka moment of my life! – Finally! I had found out what it was, a monster called Temporomandibular Joint Dysfunction (TMD). All the pieces came together and everything made sense. After a few moments of excitement however, that feeling turned to futility and almost led to anger. Why did nobody tell me? For 15 years I had been searching for clues as to why, no matter how hard I tried to overcome it, I always felt tired and constantly felt pain? Why couldn’t I do what others did – juggle work, socialize, personal life and physical exercise? Why did I have such a short temper and not help but be so impatient? Why would I have to spend 3 hours on work/study which only took others roughly 30 minutes to do?
I had to meditate for a while to calm myself down. I then realised how grateful I should be for at least finding out what the real cause is. All I needed to do now, was find the treatment. However, at this point I was unaware that this was only the beginning of a new battle.
I was probably around 8 years old. I was rather a quiet girl most of the time but when my cousins were around I turned wild, going on ventures and causing trouble (unintentionally of course!). I’m unsure when it began exactly but I started feeling discomfort around my eyes and facial area and slowly it became more difficult to see what was written on the board in class. A year later, I went to the opticians and following an eyesight test, I was given a pair of glasses. Soon after that I started experiencing changes in my facial shape and within the space of 6 months I almost looked like a totally different person.
There were other changes that I noticed such as a decrease in concentration, having pains in the neck and the shoulders and constantly feeling tired even after a full night’s sleep. I would wake up in the morning and my mother would ask me if I had a been able to get a good night’s sleep because I was grinding my teeth so badly. These symptoms were not so serious but increasing in frequency and eventually became things that I just got used to. Living with discomfort, I was easily irritated and gradually became a short tempered and impatient person.
When I was 14, I began orthodontic treatment (with 4 tooth extractions due to the size of my teeth) which lasted 2 years. I believe this was the beginning of my unhappy life. Discomfort turned to pain and other symptoms began to appear which deteriorated very quickly. Often, I experienced muscle tension around the face, headaches were unbearable from time to time and discomfort around the neck and shoulder area became permanent. Focusing at school was almost impossible and day dreaming became a habit. I became an introverted person at school, even hanging around with friends was not something that I enjoyed and slowly I started to view life in a different way.
Sadly, I thought all the things I was experiencing were what every teenager went through and that impatience and over sensitiveness were part of my personality.
Fortunately, I started break-dancing at 17 years old which allowed me to become a livelier person. Although the pains and discomfort did not go away, I felt better mentally as dancing was something I enjoyed doing. I briefly thought of doing it professionally but gave up as the pains were restricting me from doing certain moves. During university, I joined the break-dancing society which allowed me to enjoy the 3 years and also help me pull through stressful times.
It was only last year, at the age of 23, when I found out that the various not-so-serious but nagging symptoms that I experienced since early stages of my life were ultimately symptoms of chronic TMD (Temporomandibular joint Dysfunction).
October 2013 aged 24, I was diagnosed with Generalised Dystonia. The symptoms started in June 2013, from the legs which gradually spread upwards to the rest of the body. At first, no one could see that there was anything wrong with me but I had a strange feeling of muscles moving uncontrollably. I thought it was a temporary condition that would soon disappear. However, it gradually spread to the rest of the body and once it reached the jaw muscles I became very anxious. I started to worry that the condition may be permanent and cause serious damage to the body.
From then on (September 2013), the symptoms became visible – quite often I had uncontrollable shaking and twisting, hypertension, panic attacks and vertigo. Not only that, I had episodes of pain randomly attacking different parts of the body and it even got to the point where I thought the condition might be life threatening. I even left last words for my mum as I thought this might be the end. The feeling of despair and hopelessness is almost indescribable. I was lost in complete darkness. At times, it felt like I was on the edge of a precipice with no one to help me and nowhere else to turn.
Finally, with the help from my mum, I made a resolute decision to receive treatment in South Korea although I was unsure whether it would be successful.
Miraculously, on 21st Jan. 2014 I returned to the UK after being fully cured of Dystonia and TMD. It may sound overdramatic but I felt responsible as one of the fortunate ones, to share my experience and make people aware that Dystonia is curable. Thus, I decided to make this blog in the hope that it would be helpful to those (and their families) who are facing struggles every day.