Prologue
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.
ABOUT
Introduction:
Welcome to the Cure for Dystonia blog. I am 24 years old, living in the UK with a full time job and was sadly diagnosed with Generalised Dystonia October 2013. However, I was fortunate enough to find a cure and by January 2014 I was able to return home to the UK having fully recovered. Through this blog I aim to provide and share as much information as possible with other Dystonia patients. Here is a guide to get the most out of this blog:
Blog Navigation:
- My story – two subsections: my story and diary during treatment. ‘My Story’ describes the development of TMD and Dystonia and the struggles I had experienced up until the treatments. ‘Diary during treatment’ then follows but I suggest that you first have a read of the Framework and Treatment sections to aid your understanding. It is still a work in progress but I will be uploading regularly so readers can find out about my ups and downs up until the end of my treatment process. I appreciate that sequencing may be a problem for some readers (i.e. the first post seen is the latest post) but I recommend reading from the earliest date which can be done by scrolling down to the end of the page and navigating to the oldest post.
- Framework – explains concepts and theories behind FCST (Functional Cerebrospinal Therapy). It is recommended to read the subsections in chronological order.
- Treatment – explains all the available treatments at Dr Lee’s private medical practice (also known as FCST clinic)
- Pigeon Hole – miscellaneous information, tips and resources
- Clinical Cases – videos of successful treatments at FCST clinic
Brief history about myself:
- April 2012 – Discovery of TMD (self-diagnosis)
- March 2013 – Medical Diagnosis of TMD
- April 2013 – September 2013 – Dental Treatment for TMD
- June 2013 – Symptoms of Generalised Dystonia start
- October 2013 – Diagnosed with Generalised Dystonia and dental treatment discontinued
- October 2013 – FCST (Functional Cerebrospinal Therapy) started
- January 2014 – Full recovery from Generalised Dystonia and relief of TMD symptoms
Purpose of this blog:
It is common for patients suffering from chronic disorders to try many different types of allopathic and other alternative treatments. However, they are often let down after finding out that they do not have great or long lasting effects. I too have been through this – for years I had symptoms of TMD, which I didn’t identify until 2012, and I had tried most treatments available from medication, physiotherapy, acupuncture, chiropractic to sports therapy. Although some of these attempts were helpful, the symptoms would always return and I would soon be looking for the next best option to prevent the deterioration of my condition.
Consequently, I became aware and saddened by the fact that my life was all about consuming time and energy on finding effective (and sometimes expensive) treatments while my friends seemed to enjoy their youthful and passionate lives. Then, when Dystonia started, everything took a turn for the worst and my chance of living a normal life became slim. However, after 4 months of intense treatment, I finally have something to look forward to; a life without pain and limitations.
I would introduce FCST, as ‘clinically proven with sufficient scientific backing but one which lacks acknowledgement by the majority due to domination of existing ‘mainstream’ medicine’. At first, it was my mother who trusted in this treatment and convinced me to consider it as a final resort. I was sceptical but as the therapy progressed I came to realise that this was potentially the final treatment that would rule out the need for any further treatment.
Dr Lee, who treated me, developed this method of treatment. He was actually a patient himself over 30 years ago suffering from paralysis of his left arm. From seeking ways to treat the malfunctioning limb he found that the root cause of the problem with the nerves was structural distortion. But then he had to face another obstacle – an effective way to resolve the structural imbalance permanently. However, he did not give up and after years of extensive research and clinical trial and error; he was finally successful in developing a cure and he named it FCST (which in essence, focuses on TMJ balance). Over the past decade, Dr Lee has been able to actively gather hundreds of clinical evidence which has made it possible to be widespread in South Korea. Today, a substantial number of patients suffering from different symptoms are being treated his clinic every day.
Some readers may misapprehend my intention for this blog perhaps with the idea of promoting the clinic. However, I hope the readers understand that as a former Dystonia patient who has been through the difficulties, experienced the whole treatment process and now regained normality in life, it would be wrong for me to not attempt informing others in need. In fact, I realised it would be difficult to carry on with life without feeling guilty if I decided to sit back because I know only too well the frustration that other sufferers must be experiencing and the feeling of being alone with no one fully understanding what they are going through. For that reason, I am merely endeavouring to introduce this treatment as one of the options that may want to be tried by those who are desperate to live a ‘normal’ life.
Importance of TMJ
This section explains how TMJ affects the spine structure and the nervous system. Subsequently, explanation of how FCST is unique in treating TMJ to other treatments available is provided.
i) TMJ and structure
Movement of the TMJ is very closely related to the second cervical vertebra, C2 or also known as Axis. One might think that when the mandible opens and closes, its movement is centered around the condyle in the TMJ itself. However, this is not the case. According to the Quadrant Theorem of Guzay, the axis of rotation of the mandible lies exactly at the odontoid of C2. (The odontoid is the upward, toothlike protuberance from the second vertebra, around which the first vertebra rotates.) When the mandible moves downwards, this generates a pulling force, loosening the muscles around C2. Likewise, when moving up (i.e., when closing the mouth), it generates a pressure, which tightens the muscles around C2. This means that in an occlusion with decreased vertical dimension will aggravate muscle tension around C2 when the mouth is closed. Therefore, it is clear that distortion in TMJ will affect the position of the Axis too.
Of all 24 vertebrae in the spine (7 cervical, 12 thoracic, 5 lumbar), there is only one vertebra with an odontoid/axis, which is C2. Therefore, the Axis plays a key role in the balance of the entire spine. Together with the TMJ, C2 is the most significant variable affecting the entire spine structure.
So what happens next after subluxation of Axis? The rest of the spine collapses like in the domino effect even affecting position of the cranial bones and pelvis. This is explained by Lovetts reactor relationship.
According to Lovett Reactor relationship, each vertebra is coupled in motion with another vertebra and the pelvis is coupled in motion to the cranium. C1 + L5, C2 + L4 and C3 + L5 automatically move in the same direction (also known as coupling movement). The other vertebrae pairs, for example C4 + L2 move in the opposite direction. Therefore, impact on one vertebra influences other vertebrae in the spine.
Therefore, TMJ distortion causes subluxation of C2 (Axis) which leads to the collapse of the rest of the body structure.
ii) TMJ and nerves
Nine of the 12 cranial nerves are found near the temporal bones from which the mandible is suspended. Particularly, the 5th cranial nerve (also known as trigeminal nerve) innervates the TMJ and are coupled to C1 and C2 (Atlas and Axis). The cranial nerves together control 136 different muscles (or 68 pairs of “dental muscles”) connecting the entire spine. According to Dr Lee, misalignment of TMJ disturbs the trigeminal nerve and it can lead to problems in the rest of the nervous system. Problems in the nervous system may cause abnormal muscle contractions and pain due to central sensitization and wider range of brain plasticity.
Not only this, TMJ distortion which causes subluxation of C1 and C2 can limit the space of foramen magnum (which is an opening at the base of the skull) through which the cerebrospinal fluid circulates. This can negatively impact the body-brain communication and also cause restriction of the jugular foramen, another opening in the base of the skull transmitting veins, arteries, and nerves. Restriction in these openings can mean less efficient brain respiration due to decrease in the cerebrospinal fluid circulation and can also limit proper flow of blood to the brain.
The link below is a demonstration of how subluxation of upper cervical vertebrae restricts the jugular foramen. (Click slideshow in the file)
In conclusion, TMJ is the most important factor which contributes to collapse of spine structure and disruption of the nervous system.
iii) What causes TMJ imbalance?
Many people think that TMD (TMJ Dysfunction) is mostly caused by trauma (i.e. injury) to the jaw. However, there are many other causes of TMD including the following:
- Chewing on one side consistently
- Malocclusion
- Neglect of missing tooth
- Trauma due to complications of head and neck injury and traffic accident
- Bad oral habits
- Genetic or congenital problems
- Solid foods and chewing gum
- Mental stress
- Teeth grinding (Bruxism)
- Bad habits such as poor posture
When patients first experience TMJ problems, they may feel pain around the jaw area, develop headache or problems chewing. However, once TMD becomes chronic the symptoms are not only concentrated on the facial area but patients start suffering variety of symptoms including pains going down to the neck and back and psychological disorders such as depression and anxiety.
Below is another study carried out where one TMD patient was sent to different specialists and the following were her diagnosis from each of them:
It can be said that TMJ is the only joint in our body which causes such different symptoms between acute and chronic patients. Usually, for other joint related illnesses, the symptoms do not involve much more than pains around the affected joint area. However, studies have found that many chronic TMD sufferers not only experience pains and depression but also indigestion, allergies, chronic fatigue, dry/soar eyes, eczema, difficulties in hearing, loss of coordination, numbness in the limbs and fingers, tinnitus, asthma, cold hands and feet, apnoea, vertigo and many others. This can be explained by the impact TMJ imbalance has on the rest of our body structure and the nervous system as described above.
iv) How can TMJ imbalance be resolved?
There are various dental treatments, surgeries and other practices in both medical field and alternative medicine today but it may be very difficult to find treatments that are effective for all sufferers. So how is FCST different?
Dr Lee’s holistic approach is unique in that he treats TMD taking into account all of the following factors:
- Freeway space* (see below)
- Occlusion
- Position of the Cranium, TMJ, Spine and Sacrum
Ultimately, this treatment aims to achieve the optimal balance (left, right, front and back) from top to bottom of our entire body. Once this optimal balance is achieved in the entire body and patients no longer experience Deflections it is viewed that patients do not require further treatment.
* Freeway space
A freeway space is the space that exists between the upper and lower articulatory members at rest. It is only when we swallow that the teeth make contact in order to create pressure. The space varies from 1-8 mm but most people tolerate a space in the 2-3 mm region. According to Dr Lee, even 1/10 of a mm defect in the freeway space can distort the TMJ (and therefore causing problems with the nervous system). A splint made of hard material, although custom made, does not allow flexibility when there are muscular and/or structural changes in the individuals as a result of wearing the device, making it difficult to settle at the precise freeway space. Therefore, his intraoral balancing appliances are designed to fix this flaw. During treatments he uses special thin sheets of paper for optimal balance (sometimes referred to as zero point).
CLINICAL CASES
VIEW ON FCST FROM A NON-PHYSICIAN and PATIENT PERSPECTIVE
In different sections of this blog I have uploaded a number of posts with medical resources and articles which relate to FCST but I anticipate that some readers may be left feeling confused and possibly sceptical. When I first started the treatment I was also doubtful whether people with ‘incurable’ diseases could be fully cured by this simple process. Perhaps many of us are subdued by the existing medical system which convinces us to think that many diseases are far too complex to comprehend and therefore treatments must also be difficult. As a former patient who has been through the treatment process first hand, here is my view on FCST.
A proper body posture allows normal function of the brain, nerves, hormones, organs, blood circulation, etc which in turn maintains a healthy state. If for whatever reason, there is a distortion or imbalance in the structure, it affects our body one way or another and we generally refer to it as a ‘disease’ or an ‘illness’. Unfortunately, despite thousands of years of history of medicine, many physicians today tend to focus on treating the diseases/illnesses without necessarily knowing the root cause. We typically call the ones that are difficult to treat or have not found a cure for ‘intractable’ or ‘incurable’ disease.
At FCST clinic, they distinguish approximately 200 symptoms that may arise from distorted body structure and many of those symptoms relate to certain ‘diseases’. Ultimately, what this means is when we have a structural problem it can cause upto 200 symptoms, some of which we have given different names to as ‘diseases’ e.g. Dystonia. When I was asked to identify symptoms that were affecting me, I ticked as many as 68. By the time I had my last treatment, the majority had disappeared and only a few remain which do not have an impact on normal life.
As an illustration, I would describe this method of treatment as a ‘T’ balancing arrangement. Whilst the TMJ is perfectly balanced (being the horizontal line of the letter T) the C1 and C2 can be properly realigned allowing the rest of the spine to find its correct place (being the vertical line of the letter T). Therefore, the main aim and technique of FCST consists of the ‘T’ balancing I referred to and it is combined with other sub therapies to help the body find the correct posture, improve physical health by exercising, train the mind to think positively, all of which eventually lead to a proper regulation of our body systems.
Our body is assembled by many bones which are arranged in a structure and they support and work in harmony with other organs. It can be said that the most important ones are temporal and mandible bones as well as the upper cervical vertebrae because they are located very near our ‘control tower’ i.e. the brain. There is no doubt then, that problems with the position of those bones can influence the function of the brain leading to brain and/or nerve related disorders. Not only the brain function and nervous system are affected but also hormonal regulation becomes unstable which in turn can lead to further problems.
We all know that our bones cannot solely work to support the body. Muscles and nerves innervate allowing the body to control movements and function of internal organs. In other words, everything that our body is made up of is connected. Therefore, it is logical to think that if there is an imbalance in position of our bones, it also means our muscles and nerves are directly affected. Not only that, nerves, spine and other organs are all intricately related meaning that a problem in one can influence another and eventually the problem is recognized as symptoms of a disease. In short, what may appear to be a small distortion in the structure can lead to a variety of symptoms and gradually develop as diseases. Therefore, Dr Lee, the founder of FCST, refers to this situation a ‘butterfly effect’ in his book.
Based on this theory (which forms the core principle of CFM), FCST is a simple method of treatment which can be applied to many patients suffering from different diseases. Consequently, FCST can be viewed as a new paradigm of treatment, hinged upon the basic mechanism of our body which effectively cures different kinds of, what we call, ‘diseases’.
First thing you notice when you enter the treatment room is the half a dozen chairs lined up where patients are expected to sit in military position while wearing a TMJ balancing device and wait for their turn to receive Dr Lee’s therapy. It is probably a scene like no other and might even look ridiculous for first timers (experienced this myself). However, if you consider the flip side of the coin; you are not in a room with lancets (surgical knives), masked surgeons and nurses or in a place where the smell of medical substances dominates. Instead, you are in a cosy room with few other patients who are experiencing similar symptoms to you but who also have different and interesting life stories to share.
For me, it is truly amazing that our complex body can be so simple to understand. Throughout history, humans have been guilty of convoluting uncomplicated facts often leading the majority to be oblivious to the obvious. Perhaps, this is the case for modern medicine. Some may criticize and say there is lack of scientific (visible?) evidence as the saying goes “seeing is believing”. However, I believe that hearing patient experiences and seeing the changes that they go through are more powerful and significant proof.
Cause of Dystonia (and other chronic disorders)
This post explains the cause of Dystonia which basically simplifies what has already been explained within Framework. However, it is important to note that the cause explained below by Dr Lee also applies to other chronic disorders including:
- Parkinson’s
- Tourette’s or Tic Disorder
- Epilepsy
- Complex Regional Pain Syndrome
- Asthma
- Eczema
- ADHD, OCD, Depression and Anxiety
- Autism
- Schizophrenia
- Tinnitus
- Trigeminal neuralgia
- Irritable Bowels Syndrome and other indigestion related illnesses
- Chronic Fatigue
- Chronic Headache
- Herniated Discs and other disc related problems
- Paralysis and Numbness
- Stroke
- Hypertension
Over the past decade, he has treated many types of chronic disorders and his results are as following:
My view on the cause of Dystonia is due to subluxation of upper cervical vertebrae caused by distortion of Temporomandibular joint (TMJ) which leads to the related nerve cells in the brain stem sending abnormal signals to the muscles resulting in muscle spasm, tension and contractions. (See TMJ connection to Dystonia for more information)
This is because around TMJ there are 9 cranial nerves and they are directly and indirectly related to 136 muscles connected to cervical vertebrae and the rest of the spine. Especially the 5th cranial nerves which are mostly dispersed around TMJ control the Atlas and Axis (C1 and C2).
Therefore, when abnormal signals are sent through the nerves around TMJ, the related muscles, ligaments and fascias over tense and contract which essentially causes subluxation of upper cervical vertebrae.
Subluxation of the Axis causes various problems in the brain and other parts in our body. In particular, it triggers distortion and tension in the spinal cord and also restricts the foramen magnum passage. It also leads to abnormal signals being sent through to the brain stem connected to the spinal cord. I believe that the abnormal signals sent to nerve cells create damage and lead to chronic disorders (of course this is my view). Therefore, in my opinion, Dystonia is one of the disorders caused by damaged nerve cells.
For these reasons, I think the fundamental treatment is one that intercepts the abnormal signals sent through the nerves dispersed around TMJ. In order to do this, it is necessary to balance the TMJ. This allows alignment of Atlas and Axis leading to recovery of the channel from the brain to the body and restores the damaged nerve cells in the brain stem.
Therefore, to treat Dystonia, alignment of axis is vital and in order to achieve that the abnormal signals sent through the TMJ need to be eliminated. There are two major impacts of abnormal signals: 1. It travels through the sphenoid bone which is connected to the lower mandible and directly effects the sensors in the brain stem 2. Due to subluxation of the axis (C2) there are indirect effects on the brain stem.
It might also be useful to read My view on FCST.
I believe there are 4 elements in a healthy body: 1. Structure (a good posture of spine and a proper nervous system structure) 2. Mindset (Positive mind) 3. Exercise (regular exercise, good daily routine and a good posture) 4. Diet (small portions, vegetarian diet and brown rice diet)
Of the 4 elements, one that a doctor can help treat is the structure of spine and nervous system. The rest are self treatments which patients can achieve without a doctor’s help. Maintaining a positive mind can help relieve stress and anxiety and allows dispersion of healing hormones (also known as endorphins). A regular exercise and daily routine involved around nature can help train the mind. Vegetarian and brown rice diet and avoiding precooked food can also help strengthen the mindset. These efforts are very effective in maintaining a healthy body.
In order to regain a healthy structure, the abnormal signals sent through the nerves around TMJ need to be eliminated. To achieve this, a balancing appliance is required. There are different balancing appliances that are used: 1. CBA (Cervical balancing appliance) – a custom made TMJ intraoral balancing appliance which align the TMJ, cervical vertebrae and nervous system 2. TBA (TMJ Balancing appliance) and OBA (Occlusion Balancing appliance) which maintain the balance of TMJ .
The most effective treatment is if both medical treatment and self treatments are combined. However, one may still experience effective results by putting effort in the self treatments.
Within our body the following structures can become collapsed:
1. Cranium (made up of 22 bones)
2. Spine (33 vertebrae)
3. Pelvic bones (sacrum, ischium, pubic bone and ilium)
Of the above structures the following treatments are effective in regaining balance:
| 1. | FCST (Functional cerebro spinal therapy) – developed by Dr Lee this therapy allows alignment of the spine through balancing the TMJ using intraoral balancing appliances (CBA, TBA and OBA explained above) |
| 2. | LCST (Dr. Lee`s Cranio Sacral Therapy) – using a CST pillow developed by Dr Lee this therapy allows relief of sutural jamming caused by abnormal tension and contraction of the cranium |
| 3. | LPBT (Dr. Lee`s Pelvic balancing therapy) helps to reposition a distorted pelvis allowing smooth flow of the cerebrospinal fluid. Within this therapy, a Spine Balancer is also used which helps with normalization of the muscles around the vertebrae |
The following self therapies are also effective in relieving some of the symptoms:
When a person thinks positively the pituitary gland disperses endorphins which are effective in releasing energy that eases healing of the body and pain relief. However, when a person has negative thoughts dispersion of noradrenalin (which is described as a stress hormone) occurs. An effective way to maintain a positive mind is to be grateful, think of loved ones and be repentant.
Maintaining a good posture helps to align the spine and normalize the foramen magnum passage allowing stabilization of the nervous system. A collapsed spinal structure can cause distortion of the foramen magnum passage.
The 4 stretching exercises are effective in realignment of the spine. The effects are greater if the intraoral balancing appliance (TBA or OBA) is worn while carrying out these exercises. They are demonstrated in the video linked below.
A regular and good diet helps to maintain a healthy body. It is important to eat small proportions in the evening and diet focused on vegetables and brown rice helps to get rid of body wastes out of the system. It also prevents obesity and chronic diseases caused by unhealthy food.
13/12/13
Today was quite an interesting day, a few of dystonia patients from the clinic met up for lunch and discussed symptoms and treatment progress. I knew some of them but never got to talk in detail about their stories. One guy who had been coming to the clinic for quite a while told me he suffered from dystonia for over 10 years before he started the treatment – he also had schizo and anxiety. He told me that every time he went to the hospital he was told to come back another time because they didn’t have a suitable treatment other than botox. Once he found this clinic, he has been making 5 hour return trips every day from his house to the clinic.
Another guy who had it for 3 years had to move from an island where he lived to somewhere near the clinic so he can get proper treatment. It seemed that everyone had been through so much and although they were grateful to have found effective treatment, they were still going through some hardships. As I mentioned earlier in the diary, the treatment is not an easy process for the patient; it takes faith, effort, time and resilience – if any of those lack, it seems to take longer. This made me very grateful of my situation actually – to have found the clinic quite early on, support from my family and the time availability.
Another interesting fact that I noticed was that each and every patient (including me) go through the same pattern – firstly, they think that their condition is worse than everybody else’s (guess this links to negative thinking); secondly, after some time through the treatment process all sorts of thoughts go through their mind thinking theirs won’t be treated because it is unique and different to everybody else’s (this is due to anxiety and negative thinking) and thirdly, they all aim for 100% recovery quickly.
Yes, I also want 100% recovery but it seems that everyone is so overly focused on their ideal picture of the normal life that they lose patience over the treatment progress and start becoming frustrated (then being stressed as a result). Again I am grateful that I don’t have a family to look after or in financial stretch but I can imagine for some people, especially in South Korea where the welfare system is not so great, they would be under very stressful situations. But I realized that the answer to quicker recovery is to be satisfied with the improvement that has already been achieved – at the moment I feel I am 90% free from the symptoms but rather than trying to force myself for full recovery within a month (when I’ll be going back to the UK), I have decided that I can live with 10% of the symptoms for the rest of my life; it’s definitely better than nothing. This way, I will feel less anxious and stressed – I hope my theory works, then I can tell other patients about this approach too…
02/12/2013
My stomach problems have been on and off for the past few weeks and now I’m starting to realize that it is part of deflection symptoms. I am experiencing some good improvements though; concentration has definitely improved and finding it easier and easier to sit down for longer, before sitting down for anything longer than 10 minutes was like torture. I also feel less anxious about not having the TMJ balancing appliance on – it doesn’t mean that muscles don’t move at all, however, I feel that as concentration shifts away from the muscle spasm the less frequent it gets. I realize that the muscle spasm has stopped (although not sure when) after focusing on something else for a while.
Also, another good news is that my teeth have moved significantly and my bite is almost normal – my front upper teeth used to cover significant part of my lower teeth (Dr Lee referred to this as Class 2 malocclusion, overbite) but OBA has changed the bite. Now I have been told to switch to TBA now that the upper teeth and lower teeth meet where they should. I really hope that this means it’s not too long to go.
18/11/13
The treatment is going quite well. Although the progress is not as swift as hoped I am slowly regaining some control over my muscles and learning to control my moods and anxiety better as well, all without medication! With that said, I have been a little lax on my food and exercise regime, being occupied with things that I normally do. I have been out in the city a couple of times to see my friends and catching with some overdue work that had stacked up since I have fallen ill. It does feel good to finally have some control over my life and although it’s not perfect and sometimes it’s frustrating I am constantly trying to remind myself what I was like when I first came here. I am extremely grateful and whenever I am reminded I feel at peace.
As regards to my diet, it has been awful the past couple of weeks… I have never craved naughty food so badly in my life and cannot seem to handle it at all. I have had cakes, pastry, ice cream, fried chicken, beer and the list goes on. And it serves me right for having the most hideous abdominal pain today. It felt similar to food poisoning and it came out of nowhere when I was receiving treatments during the afternoon. Fortunately, Dr Lee gave me some sachets of dried herbal medicine for the stomach pain and told me to take it with warm water. He said most of his patients go through similar things so he has those sachets ready. So I took one (didn’t taste nice..) then I went to bed with a hot water bottle. Together with pain, I was also getting some flu like symptoms; I had the chills, dizziness and nausea. I had food poisoning before (really bad ones) and I was quite worried that it might go on for a while; it certainly is not a pleasant thing. Surprisingly, I just woke up after a 2 hour nap and I feel completely fine. Don’t think it was food poisoning, maybe it was a little telling off of my bad diet…
07/11/13
For the past week, I have managed to stick to a strict routine and diet, doing exercises (even started jogging!), stretching and meditating. It has been just over a month since I started the treatment and I feel normal most of the time. Dr Lee always asks me how much progress I think has been made and this week, I feel I am around 80% back to normal. I still do have odd moments when I suddenly become conscious about having muscle spasm and get quite anxious. The sensation is still there almost constantly but I think I’m learning to ignore it and not think of it as a big deal. Pain is at least 90% gone which is probably why it has been much easier to focus on the treatment and getting better rather than allowing all sorts of thoughts go through my head like I did for the first 3 weeks.
However, I have had itchy body for the past few days and quite a sensitive tingling sensation on the face, as if I am being tapped by a bunch of needles delicately, if that makes any sense. It’s not very pleasant and I’m hoping it will disappear soon.
Unfortunately, I think I’m still quite dependent on the mouth piece, worrying what will happen if I don’t have it on; a bit like the training wheels before you learn to ride a bicycle. I never got to take off the training wheels when I was younger and still can’t ride a bike… Anyway, I’m trying to come off the mouth piece slightly so I have had it out for a few hours today which has not been easy to be honest. Hopefully, I can learn to carry on with life without it soon and maybe learn to ride a bike too.
30/10/13
Over the past few days, I have concentrated on meditating and working on exercises that improve balance. A new thing that I am focusing on is chewing on both sides. I have a habit of chewing on my right side since I was young which got even worse after having braces because my orthodontist made me wear an elastic band only on my left side for over a year which made it very difficult for me to chew on that side. Looking back, the most logical explanation of my unendurable TMD is probably due to the fact that my orthodontist did not properly consider the position of my TMJ and his only goal was to make my teeth align. After 3 years of agony, I was finally free from the train track but my face eventually became more and more asymmetrical to the point where I became very self-conscious. Then, when I started work, I did not even have the mental strength to reflect on my looks because of the constant pain and depression that I had to cope with. It makes me quite emotional and perhaps angry when I think about my wasted youth, something that was completely out of my control but what can I do? At least I know what it is now and being caught up by what has already happened will not make anything better.
Anyway, I was aware of my habit of chewing on one side but I did not think much of it until now. However, I was told that chewing on one side does affect the balance of TMJ so I am making a conscious effort to chew on both sides – I can certainly feel my jaw muscles on the left side are much weaker. Something else I am trying to improve on is having equal muscle strength left and right side of my arms and hands. I am right handed and I do everything on my right hand. When I clench the fists I can really feel the difference between strength I have on my left and right side – so I have decided to do a few simple exercises and activities that improve the use of left hand, such as wrist exercises and practicing writing with my left hand. Hopefully I can become ambidextrous; this pushes me to work even harder!
Yesterday was quite strange. My body must have gone through a bit of change and my mood was uncontrollable for a good 2 hours. For example, I really craved some pastry with chocolate inside so I went to the bakery but by the time I reached the shop pastry became the last thing I wanted. So then, I walked round for a bit and came across a restaurant serving noodles which I suddenly fancied having. By the time the food came out I didn’t feel like eating at all; I ended up not even touching the noodles (I loved the food from this restaurant before so it certainly was not the food). I was so confused and could not explain why I was so temperamental. It carried on when I came back to the flat and every 5 minutes I would switch from watching TV to listening to music to going on my laptop and so on. After a while, I got so annoyed that I just went to bed. I’m so thankful it had stopped after I took a nap otherwise I would have literally gone crazy.
Then today, I made some very good progress which has made me feel very proud of myself (doesn’t happen often). I finally managed to have a CBA fitted without looking at the mirror. Dr Lee would instruct me to shift my jaw to the right but for some reason my jaw always moved to the left. Like I mentioned before, my body was doing exactly the opposite of what my brain was instructing to do. When I realize that my jaw is tilting to the left when it should be moving to the right I start feeling nervous and completely lose control over my muscles causing my jaw to tremble. So until today, I had to hold a mirror in front of me and keep a watch on my unstable jaw whilst having a CBA fitted. I hope today’s progress is a sign of significant improvement and hopefully I can pull this off again tomorrow.
27/10/13
Sorry for the delay in uploading posts! I can only blame my laziness which I am ashamed of. But I promise I will finish uploading soon!
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I realised something very interesting on Friday (25th October). I came back to the flat in the morning after having 2 sets of treatments and lied down to rest. Whilst I was lying down I noticed something quite peculiar – that my brain and my body were not in harmony at all. In fact, my body was doing exactly the opposite of what my brain was telling it to do because the more I tried to stop the muscle spasms, the worse it got. I knew anxiety and stress made spasms worse but I was not stressed at all (or at least there was nothing that I should be stressed about). It was very strange; the more I tried to focus on controlling the muscle, the less control I gained. Dr Lee had recommended trying meditation but I never tried it because I simply did not believe it would be useful. I realised then that subconsciously I was stressing myself out unnecessarily which of course did not help with muscle spasm. So I decided to try meditating, taking deep breaths and visualising my body and brain working in unity (I know this sounds weird but I could not think of any other way of meditating). In all honesty, it did not help much at first. I don’t think I noticed much difference in muscle spasm but it did help me to feel more relaxed and peaceful.
On Saturday, instead of going to the clinic, I went to see one of my friends who lives in the city. I thought it might do me good if I kept my mind off treatments for the weekend. For the first time since I started the treatment I travelled for longer than an hour on the tube. It was very tiring even though I only got to see her for a few hours; by the time I got back I was ready to go to bed. Also, it was the first time that I took off OBA for longer than 4 hours. I must admit I could not help worrying about my spasm kicking off randomly. Recently, the symptoms did not appear outwards but I wasn’t sure whether it would suddenly appear again if I was out in public for a long period of time. Despite my concern however, spending time with my friend completely took my mind off it and nothing embarrassing happened! It made me a lot more confident and reminded me that I did not have to worry so much. It also reassured me that the treatment was working.
Today, I just had the day to myself – catching up on emails, cleaning the flat and doing a few sets of exercises. I also carried on with meditating and to my surprise it really is making a difference – I actually felt that I could control the muscles better. Something odd that I observed today though – whilst my mind becomes calmer (during meditation), my heart beats faster as if I’m nervous or scared. However, I’m not bothered much by it because I know it is due to lack of control that I have over my body at the moment. All I can do at the moment is to keep telling myself it will get better soon and concentrate on positive things.
One effective way to think positively
So, I have decided to upload something completely different today. Many people know having a positive mindset has great benefits but I have seen many who struggle to find a way to do so. Thus, in this article, I aim to share my approach to staying positive. It has been very effective for me and I hope it will also be useful for the readers. I will intentionally write in a thought provoking way to really draw out the feeling of ‘gratitude’.
We all take things for granted – it is a natural human behaviour. It is only when we lose something that we realise that what we have been ‘used to’ is not something everyone enjoys. It is when this occurrence of ‘taking things for granted’ continues that we ditch the most important element in maintaining a positive mindset – An Attitude of Gratitude.
How can we become more grateful then? For me, the sense of empathy was a great tool to utilise. It is important that you actually imagine someone else’s feelings and emotions. So, turn on your empathy sensors to the max and consider the following points:
- How many meals have you had today? I won’t deny it, I love food and I cannot imagine going through a day without eating. However, I feel guilty saying this because I know that millions of people today cannot even afford 1 meal a day, let alone have access to drinking water. Imagine going through every day trying your utmost to gain access to the basic necessities of life. Did those people choose to be in poverty? No.
- What if you were born in a country where human rights are virtually nonexistent. Many people are not aware, but even today there are some countries where the citizens have no freedom, treated as slaves and tortured for no reason. Did they have a choice which country to be born in? No.
- Imagine if you were living in the medieval times. With lack of advances in medicine people had no idea what to do during outbreaks of plague. People abandoned families, even their children during the Black Death. Did they have a choice when to be born? No.
- If you are reading this, you are one of the lucky ones who can see. So many people do not enjoy this privilege.
- If you are reading this, you are one of the lucky ones who have access to the internet. Again, so many people do not enjoy this privilege.
- If you are reading this, you are one of the lucky ones who can read. So many of us take education for granted but in some places even basic level of education is not available.
Those are just a few of the points to ponder on. There are many more but I will keep it short – hopefully that list should be enough to get my point across. I do think it is a shame that our gratitude can come from comparing ourselves to the less privileged but that’s just the way we are. We are vain, shallow and dumb because we don’t remember the most important thing unless we are constantly reminded of it – ‘Living’. Anything extra is a luxury really, isn’t it? For which we should be grateful, right?
There was a time when my life was so miserable because of the ‘limitations’ from having constant pains and chronic fatigue. I always compared myself to my friends who were healthy and enjoying their life. Then, when I started to experience Dystonia symptoms I felt so anxious about my career going downhill whilst everyone else strived to achieve their goal. However, I realised that those things making me worried were really nothing compared to what some people go through. Yes, I had Dystonia but it wasn’t life threatening. Yes, I was in pain but at least I was able to enjoy most part of my life without pain. And yes, I had strange muscle contractions and probably looked strange to other people but I still had my family and friends who supported me. It definitely was a great opportunity to reconsider the values in life and it allowed me to focus on what I was able to gain from my experience, not on what I was losing. It also made me realise that there are always two sides to a situation, positives and negatives.
Is the glass half empty or half full? If your answer was ‘empty’ why not try changing it to ‘full’? The situation may not change but we can still change the way we view things – it certainly has great effects. What is even more amazing is that it does not cost anything and it can be done right now.
Thus, let’s tone down the ‘negativeness’ and think for a moment; name each and every thing or person you should be grateful for. Imagine what your life would be like without it/him/her. Take 2 minutes before you go to sleep and list 5 things every day. You might struggle at first but once you start, the list will go on and on. Only downside, it might make you cry… lots. But, don’t be put off and keep at it! I can assure you positive thinking will become easier. I must admit, I still find it difficult to always think positively but I believe in the saying ‘practice makes perfect’ so I will definitely practice every day.
I really like this quote by Hugh Downs, an American TV broadcaster. I hope the readers would also appreciate this great quote:
“A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes.”
Generalised Dystonia
This is me trying to sit straight when I still had Dystonia symptoms. I had constant muscle spasm. Although most of the time it was not visible to other people, when I experienced increased anxiety, the muscle spasm became visible.
24/10/13
It has now been 3 weeks since I started the treatment and I have to admit I feel much better both physically and mentally. Reminiscing about my state 3 weeks ago, it made me realize what it would have been like if I hadn’t found this treatment. It was a sharp reminder of how grateful I should be both to my mum and Dr Lee. It also made me think about those who are suffering, probably lost and feeling helpless by lack of access to effective treatments. So in my spare time in the evening, I decided to do some online research on how other sufferers in the world endure struggles in life. In all honesty, when I was still in the UK, I only found out to the extent that not many doctors are familiar with Dystonia (therefore difficult to diagnose) and there were not many treatment options that have long lasting effects. I had not read about the life stories of the patients. It was not difficult to find various blogs uploaded by people who were hurt by surrounding people because they don’t understand what they were going through and many were neglected by those who should have the answers. Reading some of the stories actually made me cry and I couldn’t help feeling guilty thinking that I probably should have suffered longer to realize how lucky I am. I felt so vain and was ashamed of myself. Those thoughts did certainly stay for a while and I was lost in my own world.
I spent most of today meditating on those thoughts and thinking of ways to overcome it. It started off as feeling disappointed with myself and I could see it progressing into more depressing state. I concluded that feeling guilty was not going to change anything and perhaps I should put those thoughts aside. I should concentrate on receiving treatments and recovering. May be when I’m better I will be able help other people. I hope I can…
22/10/13
I had all the time to myself as the clinic was closed today and I decided to I walk to town after having failed to go shopping on Sunday (I was too lazy). It took half an hour to walk to town shopping mall and I managed to get my haircut which I’m very happy with. Over the past few days I have pushed myself a little and did more exercise than Dr Lee recommended. And I do feel a difference, my body feels less heavy and I can notice my concentration has improved. I also feel less depressed and I can control my moods a lot better.
What I also noticed though is that my face is very itchy and found myself scratching a lot. It felt quite strange and I was eager to find out the reason for it. Wondering if I can find it on the handout that the nurse gave me on the first day I decided to read it properly (at first I didn’t read this thoroughly because it is quite long (has 15 pages!) and lack of concentration certainly did not help). In the handout there was a list of possible deflection effects and to my surprise ‘itchiness’ was one of them. In the handout it explained that it is due to toxins, bodily waste and heavy metals being discharged from the body as the systems such as blood circulation and hormonal regulation enhance. During that process, it may temporarily cause rash on the skin, excess eye discharge, acne and itchiness. I felt relieved after finding out and spent the rest of the evening watching TV and doing FCST exercises. Tomorrow I’ll be going to the clinic for treatments but I’m quite nervous about acupuncture because it was painful last time. Hoping it won’t be.
Cure for Dystonia 