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Dystonia - Blepharospasm, Oromandibular dystonia. My path to recovery.
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- Опубліковано 23 сер 2024
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My routine was like this:
-630-7:15: yoga with breathing
-Morning 7:30 before work : 20 min breathing
-8-4 : office work. In between when I can, I used to do 2-3 min exercises.
-4:00-4:30 : dance
-5:00-6:30- walk in the parks
-7:00-8:00 relaxation and meditation
-8:00-9:00 Dystonia specific exercises
-9:30 sleep
When you do this, you’ll automatically remember to do them even when you did not specify a time for an activity. It becomes natural eventually.
What was the name of the meditation you mention in the video? And music? I could not catch it.
Ajna chakra meditation
Ilayaraja music
Thank you so much for sharing your experience. I live in the UK and also have Blepharospasm (for 10 years) and more recently OMD. I especially understand how you felt about the change to your expression since having Botox injections. It is so encouraging to hear about your journey and to see how you look now. I will be watching your other videos and hope to try out the techniques that have helped you. ❤
Hope you find answers and feel free to ask any questions. I’ll pray for you to recover and manage your symptoms. 🙏🏻
You were so strong and so brave. I am proud of you my friend! What a beautiful thing to see you helping others.
Thanks for all the support girl!
I’m pleased to have found you. I was diagnosed 18 mo ago, but my symptoms began the year before shortly after cataract surgery. My doctors do not think that was the cause of my blepharospasm. I have had 5 Botox treatments, and I agree with you that they just mask the symptoms and don’t help with recovery. My plan is to watch all of your videos to help me decide a plan for me and hope to postpone or suspend the Botox.
Hari Om
Hope you find a solution and recover. 🙏🏻
Thank you for doing this 💜
To many, like myself, going through blepharospasm... hearing your experience provided a great amount of universality ...
It isn't easy to find support for this as it is not as prevalent as high blood pressure or diabetes...
So from the other side of the world, from a little small country...thank you
I only feel God chose me. 🙏🏻 May you get better soon and may Lord Aditya help you like he did to me.
I also have dystonia...
ua-cam.com/channels/SlItlqoJvHaz2ozK5QUl8A.html
It feels it's me.i am also weeping with tears with you. My eyes open after many years but I don't know it's temporary or permanent. I faced many problems. I struggled to breathe.my sgpt sgot became high bcoz of allopathic medicine side effects or may be bcoz of spasm.it also affected my heart.but now o.k.the latest is problem of speaking. Botox didn't work for me.have faith in lord Shiva. He will cure me if I deserve.
Hope will make you better. Have faith and keep working Praveen. God be with you. 🙏🏻
@@blepharospasm-myjourney thank u sis.
❤
The links to the meditations I followed are on the meditation video.
I have cervical dystonia for 20 years, with periods of remission of the disease of 7 years, 5 years and 3 years. Since last year, after the botulinum toxin injection, somehow, in background of a muscle imbalance, it also appeared in my face area. When I want to close my eyes, they close tightly, involuntarily, (when they are open I have no problems), together with the nose that twitches, the nostrils dilate and the upper lip that rises upwards. The jaw, too, is so bad. To smile is awful. I have no peace at all in the face area, it's so tiring. Could you give some advice, how to relax, especially my jaw?
Thanks a lot.
God bless!
I'm so sorry for all that you have been going through. Please see my video on how I used Botox and neuroplasticity exercises to recover faster.
You are an admirable personality.I wonder what oramandibular exercises you do?
If you've seen a toddler, or a child and how they're playing with their face features, making faces etc, it is actually building their neural network by doing all these. I do the same "So-called" exercises of making faces - all kinds of faces - funny and sad and horrific. These movements rebuild the network for us. But make sure to do them after a good breathing, relaxation and meditation sessions every day
@@blepharospasm-myjourney ok ok .I understand.You have been so helpful.God bless you.
Hello,
Could you give me some tips for relaxing my jaw?
Relaxation techniques video should help you relax the whole body. Learn to Relax your body. Jaw will come automatically. Apart from that I would suggest you follow Dystonia Recovery Program by Dr. Farias. Hope you recover soon. 🙏
Relaxation comes from 1. Meditation 2. Breathing 3. Relaxation techniques.
I also thought about taking Dr. Farias' classes, I read his books.
1. If I enroll for cervical dystonia, does it help me with problems with my face, eyes, oromandibular? I haven't seen a section for segmental dystonia.
2. Do you register and receive the exercises by email? Can you ask questions on the platform?
3. What is the minimum period after which the first results are seen?
Thanks.
Before, it helped me a lot to lie down, this relax me a lot, simptoms was gone. My prayers helped me a lot. Now I mised them. It's so hard for me, when I lie down my head it goes to the right, if I try to close my eyes, they tighten up, so does my nose, my mouth, it's a whole fight there :). I breathe very hard.
It's hard for me, but I'm trying the "OM" breathing technique, you mentioned în your video.
1. All kinds of dystonia are open to everyone on the platform. So you can practice all the areas where you have challenges
How did your nose twitched ,both nostril or just one side nostril ,did it cause pain on the root of nose and central head ,i dont know about eyes ,but i want to know the cause of nose twitching?? Trauma was the cause did you got hit by something or doing any wrong way exercise that affected your nose ???
Both nostrils. It would give severe headaches from too much of spasms and twitching. I used to get tired from not being able to control the muscles. I had no injuries or trauma. It was stress and strain on myself without knowing the limit
Can cervical dystonia also be cured?? Pls reply me mam
Yes. I have seen many patients on Dr. Farias platform recover from Cervical dystonia. Hope you'll recover soon. 🙏
1 in 5 dystonia's go in for remission without any treatment that cant be attributed to any exercise programe or botox. Hope for natural remission
What kind of music did you listen to? And what was your favorite meditation?
Ilayaraja Music. His music has tunes to activate both left and right brains and you’ll find a beautiful rhythm behind heart touching tunes.
I shared some meditation video links in another “why meditation” video. Please check there.
@@blepharospasm-myjourney I wasn't able to find your meditation videos. Where should I look for them?
It’s in the comments section here: Dystonia - Why Meditate for dystonia recovery?
ua-cam.com/video/T3lIru5m4wo/v-deo.html
Can I ask what you did to manage the pain? Or did you not have pain? My pain is 10/10 :( I need help
Mam i have tried everything starting from medicine to botox but nothing's work for me... I have been suffering task specific focal hand dystonia or writers cramp like a similar type of dystonia u have... What to do mam i really dont know... Plzzz guide me mam
Some basic exercises are common for every dystonia such as breathing, meditation, relaxation and walking. Apart from these you should start working on your hand and finger movements.
Try Deep brain stimulation.
Do you have deviated septum nose
No. What's the point?
@@blepharospasm-myjourney I was searching for movement videos recovery ,I got your video ,I didn't watched all content of your video ,what made me to talk you is that nose twitch and jaw shaking it is the same condition I am going through but not anything to eyes touch wood ,my bridge of nose is just heavy as iron ore material ,I feel like water in coconut traveling here and there same I feel on my head nose jaw ,the pressure falls on nose and then slowly it moves to jaw it goes on sometimes I feel better ,sometimes it just like I can't. Movement k sab video mujhe foreign logo k dikhte the ,I got indian and that too female sharing her experience, I felt like to share mine ,I got this movement from wrong way of exercise. Jese movement jaha hota he waha se ek awaz bhi atti he ,you know pain k sath me us awaz ko enjoy karne lagi hu ,I mean to say not exactly enjoy ,but no one can identify by seeing my face that she might have some problem deep analysis person can identify it ,but the amount of pain I can't tolerate .where in Mumbai you consulted ?? I pray daily ,you know this movements change my thoughts, body pain makes Negative to person.
@@samifjs34bro your number plzz