All posts by curefordystonia

19/10/13

I finally have adjusted my body clock and can sleep. For the past two days I have managed to sleep throughout the night. I slept for 12 hours today and I think I’m catching up on sleep that I haven’t had for 10 days. Unfortunately, I feel more focused I’m still physically tired but I’m hoping that once I start doing more exercises I will have more strength.

Today is a busy day at the clinic as it is a Saturday and all the patients who have a full time job tend to come on Saturdays to receive at least two treatments. It is usually the busiest in the morning so I went in the afternoon instead. It was the first time ever for me to manage a CBA fitting without having deflections within 2 minutes. I managed to wear the device for upto 10 minutes today and I think this is a good sign. However, for some reason when I had acupuncture, my back was in severe pain and it was almost impossible to relax throughout the 10 minutes. I nearly had to ask the nurse to take the needles out. I really hope it doesn’t hurt next time.

On a positive note, I think I’m ready to go shopping tomorrow – it is getting quite chilly here and I need some winter clothes. I saw on the website that the shopping mall in town has hairdressers so I might also get my hair cut!

17/10/13

I finally managed to get some sleep! For 7 hours I slept during the night but for strange reason I felt more worn out and found myself yawning every few minutes. So I went to the clinic first thing in the morning instead of doing exercise beforehand. Once again, my jaw would not stop trembling while I was having CBA fitted so it was really difficult. I had deflections about 3 times today; it really does not seem good. I am wondering whether the treatment is actually effective? No one else in the clinic seem to have trembling jaw when they are having the treatment while I can’t even bite properly without a mirror. It is strange though, whilst these thoughts are going through my head I am a lot calmer and less irritated… I often had uncontrollable heart thumps throughout the day but it seems less frequent. I hope this is a good sign.

I could only manage 30 minutes of walking today. I think I’m getting more comfortable though with walking outside with OBA on. I don’t really care if people look at me strangely; they have no idea what it is like to have Dystonia and if having a mouthpiece will make things better I could not care less if I look like a gorilla.

16/10/13

I officially have insomnia – I could not get any sleep whatsoever and I am physically and mentally drained. So I made a big plan, to tire myself out completely and not have a nap during the day which should knock me out by the night. After having breakfast, I decided to go out for a walk before going to the clinic. When I walked out of the flat my eyes were almost closed and my body felt so heavy. But fortunately the air outside was fresh and cold which helped me to exercise with a bit more energy.

After an hour, I went to the clinic for 11 o’clock treatment. I felt very refreshed entering the treatment room, a feeling that I have never had on other days. I was excited that treatment today was going to go very well. BUT what happens? I get 5 deflections within a space of an hour… Yes, 5 CBA fittings… and I just can’t seem to control my muscles around the jaw so it is impossible to have a CBA made without looking at the mirror. Although I was quite disappointed, I tried to keep myself occupied with positive thoughts and control my moods. I still went ahead with the plan and I went out for another walk after lunch. Now, I am exhausted and I think it is time to go to bed. Fingers crossed I will get some sleep.

14/10/13

I managed to get up quite early in the morning after sleeping for a few hours although I was still quite exhausted. When I woke up though my teeth were hurting extremely and noticed that a gap has been made on my lower teeth. Hopefully this is a good sign, perhaps my teeth are settling into place in the shape it needs to be. I went for the treatment in the morning and unfortunately deflection occurred just 2 minutes after CBA fitting so I had to get another one made. However, I’m going to take it as being one step closer to recovery and forget about it. I noticed that I have got mentally stronger which helped me to think positively throughout the day. I was more lively and stable although I still had these nagging thoughts at the back of my mind questioning whether I should put 100% faith in the treatment.

13/10/13

The clinic is closed on Sundays so I had the whole day to myself. I thought I would do a bit of exercising and relax but in all honesty I spent most of the day worrying and thinking that not receiving treatments might make things worse. I did manage to do a bit of walking outside but when I returned home I noticed the muscle spasm worsened. I do think being anxious was part of the reason and by the evening it got to a point where I found it difficult to bite and keep the OBA in place. I started to worry even more and once again it made me doubt whether this treatment was going to work on me.

12/10/13

Once again, I found it very difficult to get to sleep during the night. I must have fallen asleep at about 5 a.m. and could not wake up until midday so I went to the clinic in the afternoon. Despite sleeping for a few hours I was physically very worn out and mentally unmotivated. I struggled to keep my eyes open and felt so drowsy. Treatment went quite well, I had no visible spasms (although the sensation was still there) and I was less anxious. Afterwards, I decided to do some walking but because I was so tired I often had to slow down. I was still worried that people would look at me strangely and could not overcome self-consciousness. I still managed to stay out walking for an hour and a half though which was quite helpful because when I got home, I felt more lively and refreshed. At home, I decided to try more full body exercise sets (as recommended by Dr Lee) but after doing a few I was ready to go to bed. Hoping I can get normal sleeping pattern by tomorrow.