I have dystonia, mostly oromandibular, but also affects my head muscles and even pain on my eyebrow area. I have history of scoliosis surgery and an uncle with Parkinson’s, so I guess my communication between brain and muscles isn’t the best. During my worst pains, it was really dark. I couldn’t eat or talk, and no one could help me. Taking xanax or muscular relaxants wasn’t the best option specially during the daytime. But Botox changed my life❤️ A big hug to all the people that cannot find a good treatment yet.
@vickyoli good for you that Botox injection somehow works for your condition tho. Unlike my condition i do have it also but it’s cervical dystonia or also known as torticollis I tried once the Botox injection treatment it did not help me at all in fact my condition worsened after the painful injection I don’t really understand and not just my torticollis I’m having muscle weakness all over of my muscles and limbs so I think it’s not for everyone! I’m still trying to figure it out which is the best treatment for my condition nothing but safe and effective.
I just want to pass along that over a 6 month period of very hard work I’ve gone from barely being able to stand up (and you could hardly call it that) to weightlifting again! Doctors told me not to fight it but I learned to!
@@markcrisp07 oof was it work! To make it very short, I learned how to understand what the bad nerve impulses meant and also how to send them to my muscles correctly. Together the dysfunction started to stop, I would practice contracting muscles correctly and slowly start to forget the bad pathways. I can go in depth for you if you like but basically I followed the only good lead I had. Im prescribed marijuana for the pain and noticed everytime I use it much more normal feeling would come into my withered up right hand. I kept the nerves at bay staying high for several months while I learned to manage the sensory overload without ticking out. Couldnt do much til I learned to listen to VERY loud music to drown out my other senses. Eventually I could feel the music in my body instead of pain, and I started to be able to tolerate sensations with the loud music. I got very focused on what hurts and why, where is it coming from, what does it mean, what makes me feel like this, etc and also using my fingers everywhere on my body and consciously thinking about the areas I’m touching and how that sensation feels. Doing this all day long and just taking breaks out of exhaustion for a couple months and finally major changes started beyond just being in less pain. It took months but I started having breakthroughs! I had to learn to contract the muscles with my nerves screaming but once I started getting little bits of correct movement things got a lot better. Around the time my useless muscles started to be able to move I started working on my perceptual senses too… standing 1 inch away from a tv playing a live rave until I understood what light was and that it didn’t hurt to see for example. Things were a lot better after the visual distortions cooled down. If you had to ask me how, im getting better by will alone it feels but it’s neuroplastic principals. As I learn new ways to move I actually forget the damaged pathways. Learning I could do things my brain tells me I can’t was another big breakthrough. Also learning to do things in silly ways, then remove the silly and keep the new functioning. Like walking backwards cuz you can’t figure out “forward.” After “up down left and right” came back balance and walking soon followed. And then I got courageous enough to try micro dosing and suddenly progress came about 3-5x faster, quickly starting to forget the damaged nerves ever existed. That’s when I started weightlifting again, very messy at first but it came back quickly. What Im doing now is learning how to contract areas that are all still a mess, I do some light therapy after which helps me connect to the nerves, and then I hit stretches and massage chairs pretty hard. At this point all sorts of twisted up muscle where there was no control will start to change, turning from extremely tense and bone like to a gross gelatin feeling. From there i very lightly massage the area and the muscle will start releasing the bone, I straighten out, and it stays straight! Go back the next day do it all again with improved range of motion. Ive somehow become stronger than the dystonia. When I move now anytging that functions wrong my mind goes to and releases instead of it contracting even harder. This means the more I walk and use my body the better I get now. If I think straight thoughts I straighten out. When I wake up in the morning I feel like a totally different person. Im not waking up coiled up in a ball I can’t get out of but waking up with new nerve growth from yesterday and spend the beginning of each day learning to use the new pathways to do things normally. I still feel sick but I do not feel like I did. I no longer believe recovery isn’t possible, in fact I’d be really quite surprised if I don’t have better neural function than a lot of people in a year or two. Definitely got super hearing out of it so far. I do know at Planet Fitness Im quickly becoming the hardest working person in the gym and after that I’m not sure how to measure the dystonia? Even guitar and piano are coming back with an intense desire to create the music I hear in my head now. I could play before, but I was not creative like this! Im calling it cured once I deadlift 225lbs again but plan to go much heavier. It seems like the more impossible the goal the easier it is for me to do it now. If you happen to be trying to work through it on your own and want a more in depth explanations let me know!
@Macintoshi Mann Hey there! I just saw your message here .. I'm 19yrs old boy the symptoms started showing up in my body 2-3 years ago and no one was serious about it but today I got checked up for this and I came to know about my this disorder.. I'm completely getting broken by this... I have ambitions in life but now it seems very hard to achieve.. can you share your journey of treatment.. and can I get back to my normal life again?😞
@@fonixgaming2410 One thing that I think will be true for you is you may have to push through pain like me in order to learn proper contractions again. If you cant get the pain to somewhere you can work through id definitely recommend working with a doc to get things under control with meds or maybe even a round of Botox. This isn’t cheating yourself theyre just tools to help you get moving forward. I was fortunate that pot worked for me and I can get a script easier than I can anything else. For me I would start to see progress slow from time to time at which time Id see a not very special chiropractor for a conservative adjustment. Nothing crazy on the neck just some gentle releases to open up some range of motion. Shoot a proper oral appliance would have been a huge help I just never got one made. Also I don’t want to give you the impression that you should be trying to get to a gym and turn into Superman. The reason it’s so affective for me is because I LOVED training more than anything else in life before my accident. For me the goal of lifting weights is the same as saying “I want my whole life back.” I also feel the dystonia breaking down hard when I’m jamming on my guitar, it’s just less how I feel motivated to beat it. Try and think of a few things you cant do or can’t enjoy because of pain anymore. Think very hard about all the skills involved and break them down as small as you can. Practice every comportment individually, think hard about what’s going wrong and what’s going right when you execute movement. Search out the faulty impulses and try and distract them while you let other impulses work. It will not be straightforward and you may feel like you’re wasting your time in the beginning. If its any encouragement for a long time I would think “up” and absolutely nothing would happen besides my face turning to that of someone straining to pick up a warehouse 😂. Embrace the struggle as best you can and know that when this is all over you won’t even be able to remember the dystonia the way it feels now. Its quite a journey to go on so young in life but the great news is the rest of our lives will be filled with triumphs most can only dream of. Id be lying if I said it wouldn’t be hard but it will be a lot less miserable than living with dystonia. Honestly the worst of it is feeling isolated and this is only because of how strange my life has become. It just got hard to relate to ppl that don’t have much ambition actually. You will figure out who has real value in your life and who’s dead weight.Pull close to the people that love you. They’ve been real lifesavers for me because I couldn’t see how huge my victories were. Also I’d be cautious how seriously you listen to doctors. I had to do the opposite of what I was told, so I don’t want to say ignore them but… that’s what I did 😂. Id they’re telling you there’s no hope like mine tho thats just an indication that they’re too small minded to help you with anything besides drugs. Im real sorry you’re dealing with this sickness so young but I can tel l you the truth, it may be the biggest blessing of your life. Dystonia took so much away from me BUT I got so damn strong in the process of stealing it all back that my life is totally changed for the better. Im not scared of anything. Whatever I want, it’s mine. I don’t have limitations. There is nothing in this world that can crush my spirit now and it’s become my superpower. Dystonia is by far the best thing thats ever happened to me. Im confident that you will lead a much more fulfilled life than most “healthy” people ever will as long as you refuse to be a victim.
I have also faced this worst uncomfortable situation after taking Respiridone long acting injection. I got suicidal thoughts and difficulty in sleeping
Hey I really appreciate this, my label’s currently Parkinson’s at 28 and I was guided to TH-cam for education- thought it was weird after going through a few other videos but holy moly this one was… actually comforting in such a weird way, knowledge is power I guess? 😅 I liked that even the animations seemed considerate, the writing was well phrased and direct with positive language and avoiding negative connotations or stigma. Thank you very much for posting! ♥️
I have dystonia since I was 4 years old. Now I'm 28, I have been in the worst episode cous my neck both arms are affected. As well as my eyes and voice. But this is not everytime. I always feel this when I'm stressed, tired. I'm 28 now and I know that dystonia doesn't have. But you can still enjoy the life and live normal
Im 28 as well… had it lifelong but a car accident changed everything 3.5 years ago. I was told there’s no cure, meds stopped working, doctors offered me antidepressants when I started choking on my own throat and could barely breathe with a cpap. Im reaching out because I’m actually enjoying life now more than before the accident! The doctors were wrong… there might not be a medicine for them to prescribe but using neuro plastic principals Ive recovered probably around 50% of the way. I had very little feeling or use of my body, 12 doctors and two hospital teams were useless. I couldn’t walk upright 2 months ago now the most exciting thing I do every day is lift HEAVY weights at the gym! Also Im getting music back! And as I forget the neural damage I feel better than I have in my entire life. Do some research on neuro plasticity. Ive had success going deep in my own head and finding the dysfunction where it cant hurt me. It will be different for everyone and I would have laughed had someone called it “meditation” but its realy been a hame changer for me. Best of luck as we both carve out awesome lives ✌️
@@caroltibbetts876 if you were pointing to the treatments mentioned in this video... nothing seemed to help me except benzos but they stopped working and then seemed to make the condition worse. Did a little psychedlic therapy and everything changed. Doing much better with no doctors or medication now! If there’s anybody doing well with available treatments, very glad for them!
Mine is the entire left side of my body…acquired after a stroke wherein I fell and snapped my humerus and humoral head. It took me FOUR YEARS to get someone to pay attention. The effects on my lung and bowel is painful. The muscle contractions are making me CRAZY.
Are you still struggling with this? It took me 3.5 years and 12 doctors to not get any attention paid to me as well. When I could just barely get air in I got desperate, but docs would only offer antidepressants. I was so determined to get air in I’ve learned to beat the dystonia! Definitely leave a reply if you’re interested… went from needing a walker to get around painfully to weightlifting and playing guitar again in… geez 5 months! Was also told by docs I wouldn’t get better hope they didn’t lie to you too!
@@macintoshimann9892 Hey there! I just saw your message here .. I'm 19yrs old boy the symptoms started showing up in my body 2-3 years ago and no one was serious about it but today I got checked up for this and I came to know about my this disorder.. I'm completely getting broken by this... I have ambitions in life but now it seems very hard to achieve.. can you share your journey of treatment.. and can I get back to my normal life again?😞
Dude has great hifi system complete with tubes amplifier. Just had a muscle spasms all over today. Almost like seizures but when in relaxed mode my muscles goes wild and goes spasming. Neurologist said I did have multiple sclerosis. I'm totally aware and conscious during the attack unlike my seizure where I'll totally blacked out.
My attacks are appearing nightly now. Writhing, twisting jerky movements goes on all night not letting me sleep or even . relax .I get highly agitated and frustrated with myself Andy inability to stop this craziness I've tried muscle relaxers but nothing seems to touch it HELP !!!
@@jameswilliams5278 im so sorry of your situation but reading your comments sounds exactly like what I’m experiencing. I just could not relax to fall off into sleep, I had to go for medical weed, one pill and I’m out, you might want to try for sleep, also it helps with anxiety and pain . Much love James, respect
My dystonia got really bad during middle school, and had uncontrollable movements whenever i had to raise up from a chair, or triggered when i got stressed/anxious. I am really happy the medication i got prescribed helped a TON. It was basically a 50/50 chance they'd work or i'd have to undergo surgery. I only feel it sometimes now in comparison to before. Question: is my dystonia the reason why i find it difficult to talk sometimes? Like my throat feels tight or my chest, slurring on words, being too quiet(not being able to get a loud vocal range) and generally feeling breathy? I am 26, and when i was really young my doctor couldn't pinpoint an exact diagnosis, so it ended up being "unspecified speech difficulty". Or is it just social anxiety?
Hi I have this too the twitching and the spasms and one night at a spoon so bad my left arm hit me in the face not funny a little comical Maybe but it hurt like hell
I was given droperidol at the emergency room and it made me go through all this!!!!!!! This was the worst day of my life because I didn’t know it was the side effect from the medicine I was scared and paranoid
If he had true dystonia he can’t cure it by eating fruits. It can however flare and it hen go back to where it’s not as noticeable. Or other factors could cause symptoms of dystonia but true dystonia is usually genetic and doesn’t ever get cured or just go away fully. No supplement or food will cure my daughters dystonia unfortunately
@@clarkjc44355 there is a cure my dear...do not believe doctors they are not : "All knowing" and our creator is and has said there is a cure for everything illness except death. Look to natural cures not doctors
@@gaurav2010222 please don’t speak on things you don’t understand. This is a disability that can be irreversible for many people. Just eating fruits doesn’t help with that? I grew up vegetarian and rarely consumed msg or preservatives and ate lots of fruit. Guess what? Still disabled. Not everything works the same way for everyone. Don’t give false “cures” to people.
@@txxcisi4894 people live on air, they need no other stimulation just the breath is enough. So all I'm saying is fruits definitely can help you but if your mind is wandering else were and you're not manifesting the body and the life you want to live then you're going the wrong way. There are extreme ends " people living in air and people dying of starvation. The only difference is one knows that holistic practices are enough and the other is in a frequency of getting food " so it's all about where you are. Nothing is impossible. Take control of your own life. Take herbs that cure you. Get in the right track which seems authentic to you and resonates with you. My only intention here to share my dad's side of the story is inspire people. Don't let a doc tell you you have x days to live, then we start manifesting death on our lives. Peace love and light. I'm guided by the light and nature. Get yourself aligned and see how the Universe changes. The inner Universe is a reflection of the outer Uni-Verse
@@allisonfrancis3236 so it has to have a head tremor? I thought it was simply tightning of muscles, limited range of motion. Head twisting or leaning..? Best to get an MRI scan done..they can now see Dystonia. Even if you go to neuro they simply rely on observation and what you say. It's pretty useless really
So I just discovered I had this. I’m so miserable, I’ve been looking for so long attempting to diagnose this. I spend hours a day my whole body just uncontrollably moving, it has ruined pretty much every part of my life or made it harder. How do I make this stop please
I'm really sorry to hear that you're experiencing the challenges of dystonia. Dystonia is a neurological condition characterized by involuntary muscle contractions that can cause repetitive or twisting movements. It can indeed be distressing and affect various aspects of your life. To manage dystonia and improve your quality of life, it's crucial to work closely with a healthcare professional, preferably a neurologist or movement disorder specialist. Treatment options may include medications, physical therapy, and in some cases, botulinum toxin injections. Your healthcare provider can assess your specific situation and recommend the most appropriate treatment plan to help control the symptoms and improve your daily life. Additionally, joining support groups or seeking counseling may provide emotional support and valuable advice from others who are dealing with dystonia. Remember that you don't have to face this challenge alone, and there are healthcare professionals and support networks available to help you manage dystonia and improve your well-being. Please reach out to a healthcare provider to discuss your condition and explore treatment options.
Multifocal dystonic tremors involve involuntary muscle contractions that cause tremors in multiple areas of the body, often resulting in repetitive or twisting movements. The term "multifocal" means that more than one body part is affected, whereas "dystonic" refers to the nature of the muscle contractions. While dystonia is generally considered incurable, it's often managed with medications, physical therapy, or other treatments to reduce symptoms. It's true that dystonia isn't typically life-threatening, but it can significantly impact quality of life, making symptom management and support crucial. Please consult your health care professional
I thank mental health for my dystonia in my hands and feet!!! Extremely painful!! My fingers want to bend in every direction and my toes as well!! Being a psychotic person and on mental drugs for many years!! I didn't like the medicine that gave me this!! I told the doctor years ago to take me off it!! His saying was if it's not broken don't fix it!! I hate mental health now because of bone head mental health doctors!!!
I'm truly sorry to hear about your experience with dystonia and the challenges you've faced with your medication. Your feedback is important, and I hope you find relief and support. ❤️
I am 17 years old i have dystonia in my jaw and i am suffring , i have a question , I have been suffering from it for a few months, can I treat it completely? I'm really tired.
i hurt so bad. my legs feet and extremely mild in my neck and hands but my legs and feet are terrible especially my right foot. i dont have a neurologist at the moment but i have a doctor who will try anything for me but still cant find anything to help and im on suboxone and klonopin and baclofen and gabapentin still my life is being ruined by this. weed helps and having a couple shots at night helps to
I have not being diagnosed with this or have gone to check it out, but it happens to me after I stand up when im at rest or sitting. My left arm, including the fingers and feet starts to curl up for about 15 seconds max 30 seconds and then it’s gone. It happens sometimes, not everytime. I feel this happens when im not eating properly, or im not well hydrated.
I also feel like dystonia, my right side of my body is spasmed (neck is tilted to the front, arms and are retracted) and it takes about 10-15 seconds to go away, but it is very easy to flare up when I'm stressed, stand up or move suddenly if my blood pressure and blood calcium are low this will happen many times a day . Contrary i have a little system 2-3/ day if your blood pressure and blood calcium is normal . i feel very disapointed to my disease, now have your conditional disease reduced ? Can you share them with me ?
Whenever I get up and walk around, after I’ve been sitting a while, I Kind of buckle at my knees and my fingers curl my neck moves closer to my chest, and I kind of just sometimes fall to the floor
I have a twisting feeling in my right leg and all my legs are tired and sore I did a lot of running and I'm wondering if this could be what set on dystonia or if it could be something else
Muscle soreness and fatigue after extensive running could be attributed to overexertion or muscle strain rather than dystonia. Dystonia is a neurological condition characterized by involuntary muscle contractions that can cause twisting or repetitive movements. If you're experiencing persistent or concerning symptoms, it's essential to consult with a healthcare professional for a proper evaluation. They can help determine the cause of your discomfort and provide appropriate guidance on managing or addressing any potential issues.
I have dystonia in my face. It is awful. While i get botox it can ot completely fix as i could lose my ability to swallow. It is so abnormal to have to focus on keeping my jaw/mouth still.
The same symptoms are with me. Botox is not a permanent solution. it is costly as well as painful. the bad thing about botox is it works for half and two months only so you will have to get next dose again and again.
My Neurologist yesterday said I have it. I'm only experiencing pain in my right back muscle the lats. The spasms can be painful and stops me from standing or walking properly. I'm ok sitting, driving, cycling and sleeping. He mentioned taking a drug called Trihexyphenidyl which has memory loss side effects that could be possible. I'm going to try a month's worth of dizapan see what happens. Last resort will be the Trihexyphenidyl. Think bottox could be an option too
Anyone want to talk about Antipsychotic Withdrawal which has caused Dystonia for me?? Diazepam or Valium is a Benzo. Yeah, I’m not going to do surgery either.
A nuerologist would be who you see. Some specialize in movement disorders so when calling schedule with one that does this but all should know about dystonia. Just beat to get to the right one first
@DrAdrianRobichaud Focal dystonia of the eyelids, often known as blepharospasm, is a condition where the muscles controlling eyelid movement contract involuntarily, leading to twitching or even difficulty keeping the eyes open. The exact cause can sometimes be unclear, but it might be linked to nerve or brain function issues. Treatment options can include botulinum toxin injections or medications, so it's best to consult a neurologist or specialist for proper diagnosis and management.
I recently visited hospital, due to involuntary nervous movement, eye & neck movement with stiffness, I was told I hv this said dystonia, hv been following medications very well it seem the symptoms hv still increasingly continue, what can do about it, bcos it comes with some severe pain as well as twisting of leg & mouth reactions.
I have dysdonia from a stroke I had few years ago and I have these paralyzing seizure type things which scare me a much that I can't live with this there is no decent help here in New Zealand and I can't live with this
I have watched medical shows so i have some kind of idea hopefully one day they may have a cure or prevent this some day in future sooner then later the meds i have had abit of dystonia only slight now early this year 2022? On and off?
@@Imsotired1234 Not here to Debate you. It is what helped my dad gain back his bioelectricity at the first place. Either you hear the truth or be ignorant choice is yours. Don't let the Queen Parasite fuck with you
I have dystonia in the feet I need some help to get either some improvement I believe the hamstring muscles cause this advice and help please and thank you
I was diagnosed with cervical dystonia, and I've been up since 430 am, with muscle contractions from my head to my abdomen. Now I wonder if it's full body dystonia instead of just cervical.
I have dystonia, mostly oromandibular, but also affects my head muscles and even pain on my eyebrow area.
I have history of scoliosis surgery and an uncle with Parkinson’s, so I guess my communication between brain and muscles isn’t the best.
During my worst pains, it was really dark. I couldn’t eat or talk, and no one could help me. Taking xanax or muscular relaxants wasn’t the best option specially during the daytime.
But Botox changed my life❤️
A big hug to all the people that cannot find a good treatment yet.
Do you mastrubate
Where are you injected for Botox?
@vickyoli good for you that Botox injection somehow works for your condition tho. Unlike my condition i do have it also but it’s cervical dystonia or also known as torticollis I tried once the Botox injection treatment it did not help me at all in fact my condition worsened after the painful injection I don’t really understand and not just my torticollis I’m having muscle weakness all over of my muscles and limbs so I think it’s not for everyone! I’m still trying to figure it out which is the best treatment for my condition nothing but safe and effective.
@@headtrips1I sure wish she had answered that question.
I just want to pass along that over a 6 month period of very hard work I’ve gone from barely being able to stand up (and you could hardly call it that) to weightlifting again! Doctors told me not to fight it but I learned to!
And how did you do this?
@@markcrisp07 oof was it work! To make it very short, I learned how to understand what the bad nerve impulses meant and also how to send them to my muscles correctly. Together the dysfunction started to stop, I would practice contracting muscles correctly and slowly start to forget the bad pathways.
I can go in depth for you if you like but basically I followed the only good lead I had. Im prescribed marijuana for the pain and noticed everytime I use it much more normal feeling would come into my withered up right hand.
I kept the nerves at bay staying high for several months while I learned to manage the sensory overload without ticking out. Couldnt do much til I learned to listen to VERY loud music to drown out my other senses. Eventually I could feel the music in my body instead of pain, and I started to be able to tolerate sensations with the loud music. I got very focused on what hurts and why, where is it coming from, what does it mean, what makes me feel like this, etc and also using my fingers everywhere on my body and consciously thinking about the areas I’m touching and how that sensation feels. Doing this all day long and just taking breaks out of exhaustion for a couple months and finally major changes started beyond just being in less pain.
It took months but I started having breakthroughs! I had to learn to contract the muscles with my nerves screaming but once I started getting little bits of correct movement things got a lot better. Around the time my useless muscles started to be able to move I started working on my perceptual senses too… standing 1 inch away from a tv playing a live rave until I understood what light was and that it didn’t hurt to see for example. Things were a lot better after the visual distortions cooled down.
If you had to ask me how, im getting better by will alone it feels but it’s neuroplastic principals. As I learn new ways to move I actually forget the damaged pathways. Learning I could do things my brain tells me I can’t was another big breakthrough. Also learning to do things in silly ways, then remove the silly and keep the new functioning. Like walking backwards cuz you can’t figure out “forward.” After “up down left and right” came back balance and walking soon followed. And then I got courageous enough to try micro dosing and suddenly progress came about 3-5x faster, quickly starting to forget the damaged nerves ever existed.
That’s when I started weightlifting again, very messy at first but it came back quickly. What Im doing now is learning how to contract areas that are all still a mess, I do some light therapy after which helps me connect to the nerves, and then I hit stretches and massage chairs pretty hard. At this point all sorts of twisted up muscle where there was no control will start to change, turning from extremely tense and bone like to a gross gelatin feeling. From there i very lightly massage the area and the muscle will start releasing the bone, I straighten out, and it stays straight! Go back the next day do it all again with improved range of motion. Ive somehow become stronger than the dystonia. When I move now anytging that functions wrong my mind goes to and releases instead of it contracting even harder. This means the more I walk and use my body the better I get now. If I think straight thoughts I straighten out. When I wake up in the morning I feel like a totally different person. Im not waking up coiled up in a ball I can’t get out of but waking up with new nerve growth from yesterday and spend the beginning of each day learning to use the new pathways to do things normally. I still feel sick but I do not feel like I did. I no longer believe recovery isn’t possible, in fact I’d be really quite surprised if I don’t have better neural function than a lot of people in a year or two. Definitely got super hearing out of it so far. I do know at Planet Fitness Im quickly becoming the hardest working person in the gym and after that I’m not sure how to measure the dystonia? Even guitar and piano are coming back with an intense desire to create the music I hear in my head now. I could play before, but I was not creative like this! Im calling it cured once I deadlift 225lbs again but plan to go much heavier. It seems like the more impossible the goal the easier it is for me to do it now.
If you happen to be trying to work through it on your own and want a more in depth explanations let me know!
@Macintoshi Mann Hey there! I just saw your message here .. I'm 19yrs old boy the symptoms started showing up in my body 2-3 years ago and no one was serious about it but today I got checked up for this and I came to know about my this disorder.. I'm completely getting broken by this... I have ambitions in life but now it seems very hard to achieve.. can you share your journey of treatment.. and can I get back to my normal life again?😞
@@fonixgaming2410 One thing that I think will be true for you is you may have to push through pain like me in order to learn proper contractions again. If you cant get the pain to somewhere you can work through id definitely recommend working with a doc to get things under control with meds or maybe even a round of Botox. This isn’t cheating yourself theyre just tools to help you get moving forward. I was fortunate that pot worked for me and I can get a script easier than I can anything else. For me I would start to see progress slow from time to time at which time Id see a not very special chiropractor for a conservative adjustment. Nothing crazy on the neck just some gentle releases to open up some range of motion. Shoot a proper oral appliance would have been a huge help I just never got one made.
Also I don’t want to give you the impression that you should be trying to get to a gym and turn into Superman. The reason it’s so affective for me is because I LOVED training more than anything else in life before my accident. For me the goal of lifting weights is the same as saying “I want my whole life back.” I also feel the dystonia breaking down hard when I’m jamming on my guitar, it’s just less how I feel motivated to beat it. Try and think of a few things you cant do or can’t enjoy because of pain anymore. Think very hard about all the skills involved and break them down as small as you can. Practice every comportment individually, think hard about what’s going wrong and what’s going right when you execute movement. Search out the faulty impulses and try and distract them while you let other impulses work. It will not be straightforward and you may feel like you’re wasting your time in the beginning. If its any encouragement for a long time I would think “up” and absolutely nothing would happen besides my face turning to that of someone straining to pick up a warehouse 😂. Embrace the struggle as best you can and know that when this is all over you won’t even be able to remember the dystonia the way it feels now. Its quite a journey to go on so young in life but the great news is the rest of our lives will be filled with triumphs most can only dream of. Id be lying if I said it wouldn’t be hard but it will be a lot less miserable than living with dystonia. Honestly the worst of it is feeling isolated and this is only because of how strange my life has become. It just got hard to relate to ppl that don’t have much ambition actually. You will figure out who has real value in your life and who’s dead weight.Pull close to the people that love you. They’ve been real lifesavers for me because I couldn’t see how huge my victories were. Also I’d be cautious how seriously you listen to doctors. I had to do the opposite of what I was told, so I don’t want to say ignore them but… that’s what I did 😂. Id they’re telling you there’s no hope like mine tho thats just an indication that they’re too small minded to help you with anything besides drugs.
Im real sorry you’re dealing with this sickness so young but I can tel l you the truth, it may be the biggest blessing of your life. Dystonia took so much away from me BUT I got so damn strong in the process of stealing it all back that my life is totally changed for the better. Im not scared of anything. Whatever I want, it’s mine. I don’t have limitations. There is nothing in this world that can crush my spirit now and it’s become my superpower. Dystonia is by far the best thing thats ever happened to me. Im confident that you will lead a much more fulfilled life than most “healthy” people ever will as long as you refuse to be a victim.
@@macintoshimann9892 thanks alot for this motivation! This means alot to me.. you've inspired me to achieve alot in life ❤️
I have also faced this worst uncomfortable situation after taking Respiridone long acting injection. I got suicidal thoughts and difficulty in sleeping
Hey I really appreciate this, my label’s currently Parkinson’s at 28 and I was guided to TH-cam for education- thought it was weird after going through a few other videos but holy moly this one was… actually comforting in such a weird way, knowledge is power I guess? 😅
I liked that even the animations seemed considerate, the writing was well phrased and direct with positive language and avoiding negative connotations or stigma. Thank you very much for posting! ♥️
You are welcome.
I have a realities who has this is using Warrior balm and spray stopped the seizing
My relative has this is using creators design Warrior spray and balm stopped the seizing
I have dystonia since I was 4 years old. Now I'm 28, I have been in the worst episode cous my neck both arms are affected. As well as my eyes and voice. But this is not everytime. I always feel this when I'm stressed, tired. I'm 28 now and I know that dystonia doesn't have. But you can still enjoy the life and live normal
Sorry about the condition. Glad you are being positive.
Im 28 as well… had it lifelong but a car accident changed everything 3.5 years ago. I was told there’s no cure, meds stopped working, doctors offered me antidepressants when I started choking on my own throat and could barely breathe with a cpap.
Im reaching out because I’m actually enjoying life now more than before the accident! The doctors were wrong… there might not be a medicine for them to prescribe but using neuro plastic principals Ive recovered probably around 50% of the way. I had very little feeling or use of my body, 12 doctors and two hospital teams were useless. I couldn’t walk upright 2 months ago now the most exciting thing I do every day is lift HEAVY weights at the gym! Also Im getting music back! And as I forget the neural damage I feel better than I have in my entire life.
Do some research on neuro plasticity. Ive had success going deep in my own head and finding the dysfunction where it cant hurt me. It will be different for everyone and I would have laughed had someone called it “meditation” but its realy been a hame changer for me. Best of luck as we both carve out awesome lives ✌️
Are you talking about cervical dystonia? And did you get treatment during that time?
@@macintoshimann9892 3:29 3:29 3:29
@@caroltibbetts876 if you were pointing to the treatments mentioned in this video... nothing seemed to help me except benzos but they stopped working and then seemed to make the condition worse. Did a little psychedlic therapy and everything changed. Doing much better with no doctors or medication now! If there’s anybody doing well with available treatments, very glad for them!
Mine is the entire left side of my body…acquired after a stroke wherein I fell and snapped my humerus and humoral head. It took me FOUR YEARS to get someone to pay attention. The effects on my lung and bowel is painful. The muscle contractions are making me CRAZY.
Sorry about your experience. Hope you are better now
Mine is down my left side also
Are you still struggling with this? It took me 3.5 years and 12 doctors to not get any attention paid to me as well. When I could just barely get air in I got desperate, but docs would only offer antidepressants. I was so determined to get air in I’ve learned to beat the dystonia! Definitely leave a reply if you’re interested… went from needing a walker to get around painfully to weightlifting and playing guitar again in… geez 5 months! Was also told by docs I wouldn’t get better hope they didn’t lie to you too!
@@macintoshimann9892 Hey there! I just saw your message here .. I'm 19yrs old boy the symptoms started showing up in my body 2-3 years ago and no one was serious about it but today I got checked up for this and I came to know about my this disorder.. I'm completely getting broken by this... I have ambitions in life but now it seems very hard to achieve.. can you share your journey of treatment.. and can I get back to my normal life again?😞
@@macintoshimann9892hi. How did you do it? I really need to know
I have dystonia this is great information I used to walk and use my hands but I believe that god to is going to heal me I have dbs
Dude has great hifi system complete with tubes amplifier. Just had a muscle spasms all over today. Almost like seizures but when in relaxed mode my muscles goes wild and goes spasming. Neurologist said I did have multiple sclerosis.
I'm totally aware and conscious during the attack unlike my seizure where I'll totally blacked out.
My attacks are appearing nightly now. Writhing, twisting jerky movements goes on all night not letting me sleep or even . relax .I get highly agitated and frustrated with myself Andy inability to stop this craziness
I've tried muscle relaxers but nothing seems to touch it
HELP !!!
@@jameswilliams5278 im so sorry of your situation but reading your comments sounds exactly like what I’m experiencing. I just could not relax to fall off into sleep, I had to go for medical weed, one pill and I’m out, you might want to try for sleep, also it helps with anxiety and pain . Much love James, respect
My relative has this Warrior balm spray has stopped the seizing
What about being shot in the back. I get real bad spasms in my lower back. I’m a paraplegic
I have had dystonia for a long time and most doctors had no clue what it is or what type. They cannot find a clear cause.
My dystonia got really bad during middle school, and had uncontrollable movements whenever i had to raise up from a chair, or triggered when i got stressed/anxious. I am really happy the medication i got prescribed helped a TON. It was basically a 50/50 chance they'd work or i'd have to undergo surgery. I only feel it sometimes now in comparison to before.
Question: is my dystonia the reason why i find it difficult to talk sometimes? Like my throat feels tight or my chest, slurring on words, being too quiet(not being able to get a loud vocal range) and generally feeling breathy? I am 26, and when i was really young my doctor couldn't pinpoint an exact diagnosis, so it ended up being "unspecified speech difficulty". Or is it just social anxiety?
it is a 99% chance, my uncontrollable movements can distorts my jaw and i cant b talking sometimes
What medication??
@@leahhoffhines1518 Tegretol
I was curious what medication helped you also❤
Had been experiencing muscle spasms and uncontroled twitching. The strange thing it happens only when listening to music
Please see a doctor.
Hi I have this too the twitching and the spasms and one night at a spoon so bad my left arm hit me in the face not funny a little comical Maybe but it hurt like hell
Only listening to music?
May consult A Homeopath for this peculiar symptom. Discuss for Tarentula Hisponia
I have Dystonia and so much pain and finding g difficulties with swolling and difficult walking and have very bad tremors headaches every day ,
Do fruits
Is this something you can receive disability for?
I was given droperidol at the emergency room and it made me go through all this!!!!!!! This was the worst day of my life because I didn’t know it was the side effect from the medicine
I was scared and paranoid
I'm sorry to hear this, I hope you feel better now
Does myofascial release reduce the symptoms of dystonia?
You forgot to mention tremors as a symptom. I have cervical dystonia and that is one of the symptoms
Hey how are you now? How long have you been having cervical dystonia?
My dad had dystonia and he was able to reverse it by eating fruits for an extended period of time
If he had true dystonia he can’t cure it by eating fruits.
It can however flare and it hen go back to where it’s not as noticeable. Or other factors could cause symptoms of dystonia but true dystonia is usually genetic and doesn’t ever get cured or just go away fully.
No supplement or food will cure my daughters dystonia unfortunately
@@clarkjc44355 fasting is your only remedy. Period. Only the body can heal itself
@@clarkjc44355 there is a cure my dear...do not believe doctors they are not :
"All knowing" and our creator is and has said there is a cure for everything illness except death. Look to natural cures not doctors
@@gaurav2010222 please don’t speak on things you don’t understand. This is a disability that can be irreversible for many people. Just eating fruits doesn’t help with that? I grew up vegetarian and rarely consumed msg or preservatives and ate lots of fruit. Guess what? Still disabled. Not everything works the same way for everyone. Don’t give false “cures” to people.
@@txxcisi4894 people live on air, they need no other stimulation just the breath is enough. So all I'm saying is fruits definitely can help you but if your mind is wandering else were and you're not manifesting the body and the life you want to live then you're going the wrong way. There are extreme ends " people living in air and people dying of starvation. The only difference is one knows that holistic practices are enough and the other is in a frequency of getting food " so it's all about where you are. Nothing is impossible. Take control of your own life. Take herbs that cure you. Get in the right track which seems authentic to you and resonates with you. My only intention here to share my dad's side of the story is inspire people. Don't let a doc tell you you have x days to live, then we start manifesting death on our lives. Peace love and light. I'm guided by the light and nature. Get yourself aligned and see how the Universe changes. The inner Universe is a reflection of the outer Uni-Verse
Side affects is a big thing with medicine?
Many thanks for this useful video
Glad it was helpful!
Just curious, what are the symptoms of the cervical dystonia when it's on early stages?
Head tremor, one shoulder raised higher than the other, head tilt, brain fog, and dysphagia.
@@allisonfrancis3236 so it has to have a head tremor?
I thought it was simply tightning of muscles, limited range of motion. Head twisting or leaning..?
Best to get an MRI scan done..they can now see Dystonia. Even if you go to neuro they simply rely on observation and what you say. It's pretty useless really
Whiplash type of injury that simply gets worse and not better.
My dad was perfectly healthy and had no symptoms. It just started one day and didn't stop
So I just discovered I had this. I’m so miserable, I’ve been looking for so long attempting to diagnose this. I spend hours a day my whole body just uncontrollably moving, it has ruined pretty much every part of my life or made it harder. How do I make this stop please
I'm really sorry to hear that you're experiencing the challenges of dystonia. Dystonia is a neurological condition characterized by involuntary muscle contractions that can cause repetitive or twisting movements. It can indeed be distressing and affect various aspects of your life.
To manage dystonia and improve your quality of life, it's crucial to work closely with a healthcare professional, preferably a neurologist or movement disorder specialist. Treatment options may include medications, physical therapy, and in some cases, botulinum toxin injections. Your healthcare provider can assess your specific situation and recommend the most appropriate treatment plan to help control the symptoms and improve your daily life. Additionally, joining support groups or seeking counseling may provide emotional support and valuable advice from others who are dealing with dystonia.
Remember that you don't have to face this challenge alone, and there are healthcare professionals and support networks available to help you manage dystonia and improve your well-being. Please reach out to a healthcare provider to discuss your condition and explore treatment options.
I've been diagnosed with Multifocal Dystonic Tremors..what's the difference? I'm told it's incurable but not life shortening
Multifocal dystonic tremors involve involuntary muscle contractions that cause tremors in multiple areas of the body, often resulting in repetitive or twisting movements. The term "multifocal" means that more than one body part is affected, whereas "dystonic" refers to the nature of the muscle contractions. While dystonia is generally considered incurable, it's often managed with medications, physical therapy, or other treatments to reduce symptoms. It's true that dystonia isn't typically life-threatening, but it can significantly impact quality of life, making symptom management and support crucial. Please consult your health care professional
I have had Dystonia for years!!
How are you now ?
My son is 3 and he got dystonia 😢😢😢we don’t know what to do 😭
Does it get better? Im 26 and its terrible.
@@bradador1 Mine got better after I started treating it!
@@bryanlloyd1099 Hello!
my brother has also. What treatment did you do?
@@edenarrobang1612 I took Artane for mine!
I thank mental health for my dystonia in my hands and feet!!! Extremely painful!! My fingers want to bend in every direction and my toes as well!! Being a psychotic person and on mental drugs for many years!! I didn't like the medicine that gave me this!! I told the doctor years ago to take me off it!! His saying was if it's not broken don't fix it!! I hate mental health now because of bone head mental health doctors!!!
I'm truly sorry to hear about your experience with dystonia and the challenges you've faced with your medication. Your feedback is important, and I hope you find relief and support. ❤️
Thanks it's nice to know someone cares!
I am 17 years old i have dystonia in my jaw and i am suffring , i have a question , I have been suffering from it for a few months, can I treat it completely? I'm really tired.
There is no cure, it is just prevention.
I don't know what I have but my termers are depressing
i hurt so bad. my legs feet and extremely mild in my neck and hands but my legs and feet are terrible especially my right foot. i dont have a neurologist at the moment but i have a doctor who will try anything for me but still cant find anything to help and im on suboxone and klonopin and baclofen and gabapentin still my life is being ruined by this. weed helps and having a couple shots at night helps to
Thanks it is very helpful 🌹
hello mariam how are you where are you from
I have not being diagnosed with this or have gone to check it out, but it happens to me after I stand up when im at rest or sitting. My left arm, including the fingers and feet starts to curl up for about 15 seconds max 30 seconds and then it’s gone. It happens sometimes, not everytime. I feel this happens when im not eating properly, or im not well hydrated.
I also feel like dystonia, my right side of my body is spasmed (neck is tilted to the front, arms and are retracted) and it takes about 10-15 seconds to go away, but it is very easy to flare up when I'm stressed, stand up or move suddenly if my blood pressure and blood calcium are low this will happen many times a day . Contrary i have a little system 2-3/ day if your blood pressure and blood calcium is normal . i feel very disapointed to my disease, now have your conditional disease reduced ? Can you share them with me ?
Whenever I get up and walk around, after I’ve been sitting a while, I Kind of buckle at my knees and my fingers curl my neck moves closer to my chest, and I kind of just sometimes fall to the floor
I am the exact same!! It all started happening after I broke my toe from a sport! Has yours healed? If so how? Also how did yours start?
Its in volentry muscle movements that you can get in different places and can get seizures
@@jennyosborne6571 involuntary*
I have a twisting feeling in my right leg and all my legs are tired and sore I did a lot of running and I'm wondering if this could be what set on dystonia or if it could be something else
Muscle soreness and fatigue after extensive running could be attributed to overexertion or muscle strain rather than dystonia. Dystonia is a neurological condition characterized by involuntary muscle contractions that can cause twisting or repetitive movements. If you're experiencing persistent or concerning symptoms, it's essential to consult with a healthcare professional for a proper evaluation. They can help determine the cause of your discomfort and provide appropriate guidance on managing or addressing any potential issues.
I have dystonia in my face. It is awful. While i get botox it can ot completely fix as i could lose my ability to swallow. It is so abnormal to have to focus on keeping my jaw/mouth still.
The same symptoms are with me. Botox is not a permanent solution. it is costly as well as painful. the bad thing about botox is it works for half and two months only so you will have to get next dose again and again.
My Neurologist yesterday said I have it. I'm only experiencing pain in my right back muscle the lats. The spasms can be painful and stops me from standing or walking properly. I'm ok sitting, driving, cycling and sleeping. He mentioned taking a drug called Trihexyphenidyl which has memory loss side effects that could be possible. I'm going to try a month's worth of dizapan see what happens. Last resort will be the Trihexyphenidyl. Think bottox could be an option too
there is one solution GYM. my doctor told me that and i started to do workout. It's killing dystonia
Anyone want to talk about Antipsychotic Withdrawal which has caused Dystonia for me?? Diazepam or Valium is a Benzo. Yeah, I’m not going to do surgery either.
Hey, can you tell me something more? I quit olanzapine a year ago and im looking for answer to my muscle spasms..
I walk crooked. Everytime i stand up i feel like quazzi moto. And i hurts to stand up
can some help.me.i have dystonia im from philippines
@@raajuraaju5156 if possible why not
@@pusing010492 are you eating fruits ?
I got all those symptoms and it affects my career as a teacher. Anyone who could help me diagnose if I really have this disorder?
Got to go to a doctor bro
A nuerologist would be who you see. Some specialize in movement disorders so when calling schedule with one that does this but all should know about dystonia. Just beat to get to the right one first
@@LiMitZplus F** useless!!!
Now i know why my bidy is crooked , i have the dace the eyes the difficulties swallowing the crooked back and crooked foot
I have focal dystonia of the eyelids. Not sure of the cause.
@DrAdrianRobichaud Focal dystonia of the eyelids, often known as blepharospasm, is a condition where the muscles controlling eyelid movement contract involuntarily, leading to twitching or even difficulty keeping the eyes open. The exact cause can sometimes be unclear, but it might be linked to nerve or brain function issues. Treatment options can include botulinum toxin injections or medications, so it's best to consult a neurologist or specialist for proper diagnosis and management.
My brother has dystonia for almost 8 years. We cant afford butox too expensive to us. 😥 Were from philippines.
Sorry to hear that
Sana gagaling na sya
how much un botox
@@aqoecmaze1755 30k po and up po
effective nmn po kaya un,, kc brother q hnd n nya mkontrol pag galaw ng ulo nya
I recently visited hospital, due to involuntary nervous movement, eye & neck movement with stiffness, I was told I hv this said dystonia, hv been following medications very well it seem the symptoms hv still increasingly continue, what can do about it, bcos it comes with some severe pain as well as twisting of leg & mouth reactions.
How are you now
My 8 yr old son has started moving his neck up down n rotation from last 12 days ..can any1 plzz guide?🙏
It's important to have your son evaluated by a pediatrician to determine the cause of his neck movements and ensure appropriate care. ❤️
I have dysdonia from a stroke I had few years ago and I have these paralyzing seizure type things which scare me a much that I can't live with this there is no decent help here in New Zealand and I can't live with this
I have watched medical shows so i have some kind of idea hopefully one day they may have a cure or prevent this some day in future sooner then later the meds i have had abit of dystonia only slight now early this year 2022? On and off?
Is there a cure for dystonia?
Yes, Do only fruits for an extended period of time
@@gaurav2010222 that’s the stupidest answer I’ve ever heard. It’s literally considered a neurological disorder
@@Imsotired1234 Not here to Debate you.
It is what helped my dad gain back his bioelectricity at the first place. Either you hear the truth or be ignorant choice is yours.
Don't let the Queen Parasite fuck with you
What if the dystonia is in your feet what do you do
I have gotten surgery for mine
I have dystonia in the feet I need some help to get either some improvement I believe the hamstring muscles cause this advice and help please and thank you
we can't make medical advice via chat/comments
Exercise treatment control dystonia
i got myoclonis dystonie full body
Myoclonus-dystonia is a rare movement disorder characterized by involuntary muscle jerks and dystonia, often with a genetic basis ❤️
I was diagnosed with cervical dystonia, and I've been up since 430 am, with muscle contractions from my head to my abdomen. Now I wonder if it's full body dystonia instead of just cervical.
Does anybody know if Baclofen can cause this?
The worst medicine ever
Onda ja imam to definitivno.Od rođenja me stalno nešto jebe u pokretu i imam skoliozu😡
Omg. Thats me.
Thanks for the tips it helps a lot thank you... teamjona
weed might help
Victim of writer’s cramp 😞
Only when writing ...lol.well when else
cannabis
Slows down the trimmers
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