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.