All posts by curefordystonia


Mum left quite early in the morning. I thought I’d be crying and begging her not to go but surprisingly I was able to maintain a composed state. After she left I couldn’t get back to sleep so I decided to test something before going to the clinic. Dr Lee always stressed that I should not wear CBA for more than an hour and if I felt anything uncomfortable within the hour I should take it off immediately. But so far, I have never experienced discomfort while wearing CBA so I thought it might be more effective if I wore it for more than an hour. I woke up at 3 a.m. and could not get back to sleep so I took of OBA and put CBA on (I had already put this for an hour the day before) until 9 a.m so in total I had it on for 6 hours. I still could not feel any difference and when I went to the clinic that morning I told Dr Lee about it. He then told me that I should not wear it for longer than an hour and explained why – even if I do not feel any discomfort deflection still occurs within an hour and it is important not to wear it after deflection because it can make the condition worse. Oops.. serves me right for being rebellious!

And today, for the first time I did some walking exercises for about an hour. I did feel a little embarrassed walking around with OBA on and I was conscious that people may look at me strangely as it makes me look quite ugly (a bit like a gorilla)… I felt less tired but I felt my muscles moving around more, although it was not visible to other people). I noticed that I yawned a lot but I felt less anxious.


My daily routine is focused on getting treatments these days; most of the day I spend at the clinic getting treatments and doing exercises. I can definitely feel the good effects but I cannot say if this is a result of the treatments at this stage. However, I’m still following Dr Lee’s recommendations because I don’t really have anywhere else to go. Dr Lee says what I am going through (tiredness and feeling weak) is a good sign of improvement but still emphasises that I should keep a positive mind and exercise regularly.

I still struggle to sleep at night and feel the need to sleep for a few hours during the day. The weakness in the muscles has improved a little but the muscles around the jaw are still moving constantly which is making it difficult to wear OBA. Anxiety and low moods continue their cycle.

My mother is going back to the UK tomorrow. I told her not to worry as I have got used to things here now but I am not that confident inside…


The battle is still ongoing. Last night I tried to get some sleep during the night but it was impossible. During treatments I experienced many deflections within a short period of time and Dr Lee had to make several CBAs. I still felt drowsy and feeble for most of the day but I still tried to increase amount of exercise (probably by 5 minutes or close to that). I think I’m slowly becoming attached to the clinic. Every day I see many kids with Tourettes and other patients suffering from different kinds of illnesses. It made me feel comfortable that there were other people sick but at the same time I felt sad to think that others were suffering too.


It was a closed day for the clinic. I was still jetlagged unfortunately so I only managed to sleep for 4 hours. However, I was able to do a few sets of full body exercises with OBA although I still had muscle spasms. During the day, I slept for a few hours while I was on the CST pillow and when I woke up I noticed that I could control my body a bit better. The shaking whilst wearing OBA was almost nonexistent.  It was a good day with vast improvements.


Today, for the first time I experienced an improvement. After the morning and afternoon treatments I felt that the shaking decreased significantly and I felt energized. However, there were times when I experienced anxiety and low moods although it was not persistent throughout the day. I also found that my teeth moved quite a bit due to wearing OBA and it was difficult to chew properly. The past few days I managed to wear OBA for about 23 hours a day (only had it off while I was eating).


So it has been 4 days since I started wearing OBA and I’ve noticed that 90% of my pain has disappeared. I only slept 2 hours during the night and after receiving treatment in the morning, I managed to sleep for 4 hours in the afternoon. The spasm was still bothering me and I was not sure whether the treatments I receiving at the clinic were effective at all. I still struggled to do any exercise because I felt so tired and there was no strength in my muscles. I also had sweating and high temperature although I was not suffering from flu. However, my moods seemed to have improved a little – I felt less anxious and depressed.


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).