This afternoon I was up in London seeing my lovely neurologist. As usual I went armed with lots of questions. I feel very blessed that I see such a lovely man, who listens to everything I have to say. His manner is very calming, I hate needles, but his calm attitude puts me at complete ease, I would never let anyone else stick so many injections in me. I was excited to see him and to show him how much progress I have made with creating my life around my symptoms.
We went through all my queries before my injections and he was so helpful with each one. He is going to write to my GP explaining that I need the IV antibiotics for Lyme Disease, I am relieved he has agreed to do this as it means I do not have to argue with my GP about it. I have a severe intolerance to Lactose, which unfortunately all but one of medications contain. At first this was fine as my body was coping with the small amount, but now that it has slowly built up in system my body is reacting and is making my other medical conditions, e.g IBS, worse. The most annoying issue with it is that no matter how much time I sleep for I wake up feeling like I never went to sleep and I find it hard to keep going in the days, my neurologist has offered to get the pharmacy at the hospital to look into alternatives for me. This would make such a big difference. We have also juggled around my next two appointment to make sure that my jaw is in working order for Christmas and my 21st birthday.
We spoke about my functional paralysis and agreed that in a way it was positive as it was less disruptive to life, although it is not ideal. There is not much I can do other than take pain killers and try to stimulate the part that is paralysed in attempt to disrupt the incorrect signals that are being sent – this has not worked yet but I shall keep trying. I had my eyes, jaw and neck injected with Botox so my spasms shall continue to my kept in check and my jaw tremor should soon settle down for a few weeks.
It was a fantastic appointment. I am truly blessed to have such a wonderful neurologist looking after me.
A few days ago my jaw tremor returned, it is an on/off tremor at the moment and the more I use my jaw the more it tremors. I am using a baby teething dummy to protect my teeth and tongue, however the pain it triggers when the tremor causes my bottom teeth to bang against the tooth it has loosened on my upper row of teeth or my tongue often triggers off a seizure.
As you can see from the video, it is not to extreme yet, so the Botox must still have some sort of hold over it, but not much. I cannot wait for Tuesday when I see my neurologist for more injections.
Today my jaw tremor has returned, I’m not too pleased about this as it is earlier than I expected it to be, however I am having my Botox injections next Tuesday so it’s only one week of putting up with it. I do look rather silly as I have a baby teething dummy in my mouth to protect my teeth so that the tremor does not loosen any more of them.
I have had weekly reflexology sessions for a few months now and I cannot get over just how much of a positive effect it has on my body. My feet like to spasm in the evening and the pain in my knee and hip joints get bad, this normally means I will be lucky to get more than four hours sleep. However with reflexology I have found that I get between three and four fantastic nights of sleep, which makes a big positive impact on my energy levels during the day which enables me to handle my spasms better.
I tend to have my reflexology sessions on a monday afternoon. The night before the session my sleep is almost non-existent, I’ll spend the night strapped up to my TENS Machine, doing my meditation breathing exercises etc in an attempt to get to sleep. I have even started using rescue remedy night drops which have helped a bit. To go from almost no sleep to the next night sleeping dead to the world is the most amazing experience. If I could afford to have reflexology several times a week I would not think twice about doing so.
I rely on medication to try to suppress and manage my Dystonia. Whilst these medications are essential I would much rather not take them as it’s not good for your kidneys and your liver to be constantly bombarded with them. Therefore having an alternative to help me sleep and deal with my symptoms is such a giant relief as I was very reluctant to go back on to my sleeping medications. When you have Dystonia you are told to try to avoid stress as it can exacerbate your symptoms, now obviously it’s near impossible to lead a stress free life as Dystonia itself is rather stressful. Reflexology is so far my biggest stress reliever, I honestly do not know how I would cope without it.
I saw this quote earlier and fell in love with it, I find it rings very true.
Earlier on today my jaw developed a sort of tremor. It is extremely painful and my teeth constantly caught against my tongue and gums. It is hard to explain exactly how this tremor goes so I have uploaded the above video.
After taking two diazepam we eventually got the tremor to stop for a short while, however as soon as I tried to use my mouth it set the tremor off again. I am hoping this new symptom will follow the same pattern as all my symptoms when they started. It starts off seeming like it is constant and then gradually calms down so it is still horrid but nowhere near as frequent.
I would be very interested to hear from anyone else who has experienced this type of tremor. So please get in contact with me if you have experienced this or something similar.