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TOPIC: Three things that helped my Cervical Dystonia

Three things that helped my Cervical Dystonia 5 years 8 months ago #833

  • Laura98
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Hi there

I was diagnosed with Cervical Dystonia back in September in my neck and shoulders. I had a constant head tremor and I couldn't really walk for longer than a few moments. Having received my first lots of Botox the tremor went but my neck was stuck back and to the right, and my shoulders and back were forced forwards. I couldn't even lift my hands above my head or walk for more than a few steps. It really was such a dark time, so I'd like to share three things that have really, really helped me.

Firstly, I went to see a neuro physio, so a physiotherapist specialising in neurological conditions. I really can't say enough how much of a difference this made. After four weeks of seeing her I was able to turn my neck around and after a while my posture returned to normal. However, I still suffered from spasms and I was unable to walk without my head turning completely to the right. A friend of mine suggested EFT. It's a bit like acupuncture but without needles. You simply tap on different parts of the body and focus on whatever is causing you pain. I really hadn't expected much from it, but I was in so much pain I thought I'd give it a go. Honestly, even after just a couple of days I noticed the difference. Not only did I feel much more positive about things but my spasms had pretty much stopped and I was able to walk, for the first time, without looking completely over to the right. I am now able to walk as well as ever and I can even go running again. I do still have Botox injections, but if I don't continue with my EFT or physio, I notice things get progressively worse. If you are interested in finding out more about EFT, here are a few links: [website addresses removed by moderator]

Finally, the other thing that has really helped is meditation. I had never really set aside time for anything like meditating but, again, it really made such a difference. It just means you can slow down your thinking a bit and actually concentrate on what your body is doing. This is the site that I use [Deleted by moderator] It's really good because it talks you through what you need to do but it doesn't take up much time.

With all these things, you have to incorporate them into your daily routine because they're not a quick fix. But they've helped me so much and I remember how absolutely overwhelmed I felt, even back in January. I hope they work for you too.

Just to add, I'm not affiliated to any of these people or organisations - they're just the ones that helped me.
Last Edit: 5 years 8 months ago by Chris.Yarrington. Reason: Unable to promote specific companies / websites on the Forum
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Re: Three things that helped my Cervical Dystonia 5 years 8 months ago #842

  • mikl
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Funnily enough I've just suggested meditation to another member. This was after a recent visit to Conishead Priory in Cumbria.To be honest it's probably good for everyone!
I know it's frowned on but I find a few glasses of red wine in the evening very useful. Sometimes I wonder if I've got alcohol responsive dystonia!:ohmy: :ohmy:
No, really, is that you?
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Re: Three things that helped my Cervical Dystonia 5 years 8 months ago #853

  • leeollie
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Interesting that you mention meditation. I've had Cervical Dystonia for 2.5 years after a bicycle accident in which I fractured my left shoulder. My head turns to the left and slightly down. I've since figured out a number of things that make my CD worse or better. On reflecting what I've written below I have realised that it's not all about what diminishes the pain or stops the pulling, it's also about what makes me feel more positive, upbeat and 'with it'/clearer thinking - the other things that help make life more positive and fun. I hope some of this will be of some help to someone.

*****

For me what makes it worse

Walking: I was fast walking over an hour a day 5 days a week. Besides CD, I have moderate scoliosis which means one side of my body is more rigid than the other. I had terrible pulling across my face, scalp, from my shoulder blade and jaw pain (so much that it felt like my jaw was going to dislocate). Since I stopped walking these symptoms have disappeared. I never had problems with fast walking before my bike accident so I guess my scoliosis wasn't the problem.

Gym: I've had to say goodbye to my legs, bums and tums class as the hand weights were over working my right sternomascloid (?). Stomach exercises where I had to hold my head up were also hugely detrimental. The terrible pulling across my face, scalp, back etc has stopped.

Chiro: I went to such a great chiro when I was walking and suffering terribly. Since I stopped walking I no longer need to go to her. I also have a feeling that the chiro might have actually made it worse.

Moon: I may sound crazy, but I have noticed over the last few months that my CD (definitely my moods) get worse the week before full moon. Our bodies are 80% water, there must be some effect. Keep a record and see if it affects you.

******

For me what makes it better

Out of desperation I went on a 4 day full day spiritual healing workshop. I didn't think I'd be able to sit in a chair for 10 hours a day. I made sure I sat so that my head turned in the opposite direction (interestingly I find that I get less pain in my shoulder blade at the back if I look in the opposite direction to which my head wants to turn). We meditated, did chakra healing and released past issues.

Meditation: we did some +-40 minute meditations, which I really felt healed and replenished my body. I felt so intensely relaxed afterwards. I'm definitely going to keep this up.

Chakra healing and 'giving' energy: We learnt how to heal our own chakras and also worked in pairs to 'give' energy to someone else. I felt like I was **radiating** energy for 24 hours after this. Really dramatic effect.

Release past issues: I also did a one on one session with the healer to release memories/past issues. Whenever an issue or emotion came up, I 'released' it by saying "I release the *** (i.e. anger), I am in divine flow". This had a dramatic effect and I felt energy moving through my body and my body healing. I probably sound like a nutter, but I'm convinced that I have been healed. It's difficult to describe, but I felt energy circulating throughout my body and I *knew* my body was healing. My head still turns to the side (not nearly as much as it used to), but I keep telling myself that any turning now is old habits. I.e. my head turns to the side much more with a certain friend that I have confided in the last year. With others that aren't aware of my CD, my head turns far less. Still trying to figure this all out!

Feldenkrais/Dynamic stretching: Every 2 months I go to an experienced Feldenkrais practitioner in Mauritius (where I live). She herself has been healed. I have since read that healers who have been healed themselves seem to have stronger 'powers'. She's amazing. I lie on my back and she moves parts of my body and can see which part of my body is linking or incorrectly linking to which part. Over the last year she has reduced many of these incorrect links, i.e. muscles pulling my shoulder blades and neck (too connected) and the same in the front of my body. I've been doing 'exercises' she's give me and one of them is excellent. I have to draw words with my chin from side to side. So, i.e. facing the left I write a word with my chin (focus on using your chin, not nose) and keep writing words until I am facing the right. I then work from right to left. This dissociates the muscles that are incorrectly linking to the neck muscles which are pulling.

Think before speaking: One of the things my pract told me today is that I am not thinking before saying/doing things or I am not making decisions at all. I think this is a consequence of my CD. When my head is stressing me, I can't think clearly and I end up saying whatever comes into my head. She's advised me to 'observe, think and visualise and then decide/talk'. I am also weighed down by fears (fears of growing old alone, losing my husband etc) and am trying to focus on living in the 'now'. Eckhart Tolle's book 'A New Earth' has been a great help here.

Movie: The last movie I watched, I forced my head to stay straight. It took every ounce of strength and I fought the turning as much as I could, also fought my back twisting when my head wanted to turn. It did turn at times, but I forced it back. I found towards the end that I actually found some relief in this and felt better afterwards. I'm going to try it again.

Sitting: I've built a stand up desk to stop sitting for long periods as the Feldenkrais practitioner advised against sitting for long periods. It was tiring at first, but I'm positive it has contributed to my much improved state.

Spreeder: Not sure if this qualifies as helping my CD, but it certainly had a dramatic effect on my mood. I go to BBC News and copy an article and then paste it into Spreeder, which is a speed reading site. The reason I needed this was that my concentration and clear thinking has dramatically reduced with CD. It's understandable as it's very disconcerting to have my head pulling/turning every second. Having to concentate on pulling my head back (especially during conversations with people) disrupted my concentration...like having a damn tap dripping on my head. Also, my Feldenkrais practitioner 'felt' the blood flow to my brain (she felt the top of my head) and it was greatly reduced. I was feeling stupid in social situations because I couldn't follow conversations, which led me to Spreeder. I try to read a few articles a day (some from 'DamnInteresting'), the speed helps me 'get them in' quickly and I feel inspired and boosted. I have also signed up to learn vocabulary by audio. Not sure if we're allowed to post links here, but it's a great program with 2 quite entertaining people. Anyway, I lie down and listen to audio downloads and learn 5 new words a day, which only takes about 10-15 mins. My body feels remarkably rejuvenated afterwards and I feel inspired that I've increased my vocab. I really think little things like this can at least help improve our confidence and moods.

Eye exercises
I also do eye exercises as it felt that it was affecting my left eye, i.e. my left eye pulling to the left. Since doing them I no longer have this problem. I do them every now & then.

Swimming underwater
I did some research and discovered that swimming underwater may help blood flow to the brain. Living in Mauritius it's been easy for me to do this. I try swim underwater - I only manage about 6 breastrokes before I have to come up, but I do this for about 20 mins. I have noticed a difference. My feldenkrais practitioner confirmed that it does increase blood flow to the brain. I do know that long periods underwater is not good so be careful.

Vitamins: My Feldenkrais practitioner advised me to take vitamin B, Calcium Citrate, Magnesium Citrate and Omega 3 (might have another name) and vitamin C. I started taking them when I stopped walking so can't tell if they have helped but am keeping this up.

Morning pages: I try to write at least 2 fullscap pages every morning on anything. I find it really helps my moods and helps me to see the 'wood for the trees'.

Alcohol: I switched from wine (too strong) to beer and now in social situations I find *nursing* one beer has a hugely calming effect and I don't get drunk. I'm trying not to make it a habit, but I did always drink alcohol and it's fine for me in moderation.

Food: I've cut out sugar and wheat and have been following recipes on a blog called skandifoodie. I believe that all of this helps and any tiny amount of reduction in the symptoms is a vast improvement in my opinion. Other food I try to have every day is papaya (smoothie), dark chocolate, turmeric tea (delicious), nuts, almond milk (make your own).

*****
I haven't tried Botox and I hope I won't have to. I'm determined to find an alternative solution that focuses on the core of the problem. I don't care that CD is labelled 'incurable'. I believe that it's curable and I think it's horrendous that we're told that there is no hope.

Look up 'What the bleep do we know' on Youtube. Someone who's name starts with an 'a' has posted 12 videos on this. It's mindblowing and really made me think about the power of our minds and how our thoughts affect our bodies. The follow-up 'Down the rabbit hole' is the next 'movie', which I haven't watched yet.

This is what I've figured out works for me. I know that we all have different symptoms so the above may not apply to you. I'd love to hear any other accounts of what works/doesn't work for you. I am going to look into EFT, Laura98.

Take care
Lee-Ann
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Re: Three things that helped my Cervical Dystonia 5 years 8 months ago #857

  • jasmine
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Thanks for the spreeder info that will make things a lot easier for me I have MD not CD and can struggle concentrating on what I'm reading, would never have thought of it!

:-)

Jas
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Re: Three things that helped my Cervical Dystonia 3 years 6 months ago #3169

  • clavin
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Hi leeollie and laura
Can you tell me what kind of eye exercises did you do? I have the same problem as you and have the eye issues. It would be really helpful if you could tell me about your present status and what exercise are doing. And Laura can tell me where did you get your eft done? And what kind of physio do you do? Is been really hard to cope up lately. I am thinking of getting acupuncture. I will report if something feels good for me for others to try
Thanks
Last Edit: 3 years 6 months ago by clavin.
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Re: Three things that helped my Cervical Dystonia 3 years 6 months ago #3171

  • leeollie
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Hi Clavin

I can't remember the specific eye exercises I did - they were on a website of a Jewish person born near blind who developed such great eye exercises that he can now drive a car. I can't seem ti find him via google search, but I'm sure that any eye exercises will help. They helped me temporarily, but what has helped me the most is Transcendental Meditation. It has helped to calm down my nervous system. I always felt that there was a link from my stomach to my neck and eye muscles. Whenever I felt tense, my stomach would tense and my neck would turn. The TM has helped the tension and stress dramatically and I now don't seem to have this physical muscular link between my stomach and neck/eyes. I can also highly recommend Reiki. I've only down Reiki 1 and do it on myself for an hour or so a day - it has an amazing comforting, calming effect. I probably won't do Reki 2 and 3 and this is enough for me. I also highly recommend doing a hair mineral analysis to determine if you have any deficiencies such as magnesium, vitamin B's and D. Magnesium is essential for the nervous system. Another practice I do most days is Feldenkrais - a dvd can be ordered via Natacha Jarousse (google her). It's amazing as it brings your body back to the range of movement of a child. Most of the exercises are done on your back. Hope this helps! I feel for you and wish you all the best. Believe that it can get better. Another thing I recently discovered is Dawn Clark. Google her and sign up and watch her three free videos - quite amazing. I really believe that if you can calm the nervous system, try to live more in the now and get on the path to following your true path/self the dystonia will fade away - it has for me. Take care
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