As many of you will know, around a month ago I attempted to cut all stimulants out of my diet to see if it would have any impact on my tremors. Over the last week I have slowly introduced stimulants in low quantity’s back into my diet to see if there would be a noticeable difference in my body.
The results from my little experiment were extremely interesting. Whilst cutting out the stimulants did not stop my tremors it reduced them greatly, I would say it almost halved the number of tremors I have in a day. When I reintroduced the stimulants back into my diet this week, the number of tremors I have been having shot back up! I was careful to only consume a small quantity of stimulants just in-case it caused an increase, I did not expect this small amount to have such a big impact!
It is interesting to know that stimulants do actually have a physical impact on my Dystonia. Now that I know just how much of an impact it has on my symptoms I am going to make sure that I avoid stimulants as much as possible.
I find knowing that it impacts me to be a comforting thought, as it means that by avoiding consuming stimulants as much as possible, then to a degree, I have control over the severity and frequency of my tremors. It gives me hope that there are natural ways to control and treat this condition along side medication.
I am going to do more research into foods that can impact Dystonia to see if I can find anything else that I may benefit from cutting out of my diet.
Today has been such a fantastic and empowering day! I had been looking forward to today all week as I had planned to go out and see a few friends and then have a personal training session. Normally my friends would come to see me, and I would sit in the middle of my bed so that if I do have a Non Epileptic Seizure I am safe. Instead I went out to my friend’s house, and my mum left me there on my own. This was the first time I had been left in someone else’s house on my own since July 2012. This excited and scared me. It turned out that I had no reason to be scared as it went perfectly. I spent the time sitting down, laughing with them and for a few hours felt like a normal 20-year-old. This has given me confidence to venture out more, I know that eventually my little Dystonia alien will act up but I cannot let the fear of that keep me from trying to establish a normal social life.
I had not been able to see my Personal Trainer for a few weeks as my spasms had been so bad and more of my body had been affected (only my left leg is unaffected now). As usual I was really looking forward to today’s session. I love our sessions as I am doing something proactive that not only challenges my little Dystonia alien but makes me feel positive about myself.
In today’s session my dystonia attempted to act up, and we worked around it. I paused when the spasms made it to hard to do that particular exercise but carried on as soon as it released. It was an extremely good session and I only had one tiny Non Epileptic Attack and a handful of spasms in it, which I thought was fab considering it had been a few weeks and my body’s not been great recently.
My Personal Trainer and I had previously discussed trying out a TENS machine to try to counteract the spasms. Whilst my hand was in spasm, he put the TENS machine up to full power and within a few seconds the spasm in my hand had released. The theory behind this is that to use a set of muscles another set has to relax, so by stimulating the relaxed muscles the spasming ones had no choice but to relax. The positive outcome it seemed to be having amazed me, it was like having a remote control for my Dystonia alien. I have no idea if this will happen on other parts of the body or if stronger/different spasms will react so positively, however this is an exciting experiment that I am going to enjoy greatly. I am planning on videoing my hand in spasm and how the TENS relaxes it, so that I can show my consultant.
If anyone has tried using a TENS before for Dystonia please let me know, I would be extremely interested to hear how you got on with it. You can get in touch with me by either commenting on this post or by going to this page https://www.facebook.com/dystoniajourney where you can inbox me privately or comment publicly.
Yesterday evening I finally received an email from my consultant saying he would see me next Tuesday at 1pm! I am so happy, it will be such a relief to have the Botox done, so that my Ormandibular Dystonia will not cause me any pain for a few months. Another bonus is that when the jaw pain eases off, so do my Non Epileptic Seizures! I am going to have a word with him while I am there, about what I do when the Botox wears off next time, as I find it unacceptable to have to battle for so long to get seen!
Over the past couple of months I have read a lot of articles to do with meditation helping with Dystonia. In most cases stress aggravates Dystonia, so doctors often advise their patients to try to live a ‘calm and stress free life’. This is rather ironic, considering that Dystonia causes stress itself due to the pain it inflicts and its life changing nature. This is where meditation comes in, particularly Mindful Meditation. It is all about sitting or lying down comfortably (I know this is often the hard bit to do for Dystonia Sufferers) and trying to focus on the present moment, feeling calm and relaxed.
When I first heard about Mindful Meditation, I was not sold by it, I was very dubious as it seemed a bit ‘fluffy’. However after reading more into it and reading claims that it really did help keep stress levels down which in turn calmed Dystonia down a bit, I found myself thinking why not. I am at the point where I shall try anything, if it means that I can have some sort of slight relief from my Dystonia.
I ended up scouring Amazon for books on meditation, Mindful meditation in particular, until I found three, that not only looked like what I wanted, but had a lot of positive reviews as well. I brought Living well with Pain and illness by Vidyamala Burch, Relaxation for Dummies (also comes with a fab CD to guide you through your meditation) and Heal Yourself by Anne Jones (I am just about to start reading this one).
After spending a few days reading through Living well with Pain and Illness, and Relaxation for Dummies, I decided to try meditating for the first time last night. I put on the CD provided to help guide me through it. As it was my first time meditating, I chose to do the shortest one first. I must admit that I was pleasantly surprised. I had started the meditation in a lot of pain due to my jaw spasm, and was feeling rather stressed over it. However by the end of it I was feeling fairly relaxed. I was still in a lot pain, but I was not stressing as much over it.
Research shows that after a few weeks of doing mindful meditation, that the brain actually shows a physical difference when scanned The majority of scans show the stress section of the brain has actually shrunk, and the positivity section was lit up/grown. I am going to attempt to meditate twice a day for two months. At the beginning and end of the meditation, I am going to document how I feel and how my dystonia is. Then at the end of these two months I will compare how I am at the end of the ‘experiment’ to the beginning of it. It shall be an interesting and hopefully positive experience.
I am happy to announce that over the Christmas period my Dystonia behaved, with the exception of one or two moments. The relief I felt after going Christmas day and my birthday without having my dystonia play up was immense! I had worried a lot about spending the Christmas period in agony, thank fully I ended up worrying for nothing. To make things even better I even managed to spend 6 hours clothes shopping with my family, with only my eyes playing up now and then. I managed to get in and out of my wheelchair frequently so I could try clothes on without my leg making to much of a fuss. By the end of the day, I was exhausted and found it very difficult to move around, but this did not bother me as the fact I managed to spend so long out and about and try clothes on was a major achievement for me!
Yesterday I picked up my glasses from the opticians, this means that I can now start judging whether it is my eyes straining that causes my eyes to spasm and go blind. Every day, I am going to keep a diary of what activities I have done and how my eyes have reacted to each activity, this will enable me to have a fairly accurate idea (after a number of weeks) as to whether my theory to why I go blind is right or not. I am quiet excited, as if I am right and wearing glasses helps stop the spasms, this will make a significant impact on my life.
My jaw dystonia is really playing up at the moment, which in turn brings on my Non Epileptic Seizures. Despite my consultant emailing me 3 weeks ago saying he would do my Botox injections next week, I have still not received a date for it to be done. When I finally get to see him and have the injections done, I am going to ask him if there is anyway we can just book a date in advance, for around the time the injections stop working, to have treatment again. To me this is a logical step to make, however it is becoming more and more apparent to me that the NHS system is not necessarily a logical one.
I hope you all had a fantastic Christmas and that you all have a great new year.
So it is getting to the time of year I love! The trees are turning beautiful colours, the air is getting cooler which always makes me start hoping for snow, and the shops start displaying amazing Christmas decorations. Just going out and about at this time of year puts a giant smile on my face. However my Dystonia alien has decided that he hates the cold! Every time we venture out into the cold, my Dystonia alien acts up, causing my right arm to spasm and shake violently.
I am therefore putting my foot down. The Dystonia alien may have control of the majority of my body but it shall not take control over my favourite time of year! I want to be able to go out in the snow! When out shopping today with my mum, we invested in some warm/fluffy mittens, and a lovely warm blanket to cover me up with when I am out in my wheelchair. My theory is if I wear loads of layers and cover myself up as much as possible then my body should hopefully not go into spasm.
It shall be another experiment, which hopefully turn out to be just as positive as the last.
Yesterday I went out to the cinema to see the new James Bond film. I was really excited, yet filled with nerves. The reason for the nerves was that back in August I was diagnosed with Non Epileptic Attack Disorder, my seizures seemed to be triggered by extreme pain, lights being shone directly in to my eyes and flashing lights. Despite the fact that I have not had a seizure in over 5 weeks, I was still worried, after all with the amount of explosions that there are in James Bond films, there was bound to be some flashing lights.
So you can imagine how ecstatic I was, when we got to the end of the film without having any seizures. The flashing lights had merely set my dystonia off, which left me blind for a few minutes. The was yet another huge step forward for me, and has filled me with confidence. It was a very successfully and enjoyable experiment 🙂
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