Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

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.

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Comments on: "Consultant News and Meditation." (3)

  1. I just thought I’d say hello as I found your blog whilst checking if my own was coming up in google or not (narcissistic I know). I started having Non Epileptic Seizures in April last year and I’m still ambling my way through in a vague attempt to get some treatment. I’ve found that mindfulness meditation and using grounding techniques can be really, really effective, although that does require me remembering to do them. How was Living Well with Pain and Illness? I attempted working through “Mindfulness – A Practical Guide to Finding Peace in a Frantic World” but ended up forgetting to practice every day due to general exhaustion and the like.

    Anyway, sorry for the long ramble, but thought I’d say hello.

    • Heya. Thanks for the comment! Haha, I have done that before too 🙂 Its rather ‘fluffy’ wording, if you know what I mean, but once you get past that aspect of it, it is really quiet good.
      Oh I havn’t heard of that book, I shall have to look it up. I try to do meditation morning and evening. So that if I really tired in the evening it does not matter as I have at least done it once.
      Have you found anything that triggers your seizures off?
      I shall check your blog out 🙂 xx

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