I am SO grateful to have found you and you’re channel. I feel more understood and seen then ever. Since I was 14 I began to show symptoms of Cervical Dystonia. It was on and off for several years after that and I had no idea what was happening to me. It was devastating and I shamed myself so much (this is something I still am yet to overcome) but after it started getting terrible after a traumatic emotional event I finally opened up to the Drs..... they all had no idea what was wrong with with me and over a year ago I discovered Cervical Dystonia and cried because I KNEW that’s what I experience. Since then I told my Dr but she never looked into it. I don’t think she’s heard of it so she blew me off and labelled it as Fibromyalgia.. in this time I have discovered that yes I need to find ways to detox, address my trauma and implement neuroplaticity. I started to lose more function after a toxic relationship and heavy breakup. During this relationship I had a drug induced psychosis on 🍄 (however during that trip there was a correlation between having braces during my childhood and experiencing severe pain). I learned that neurotoxicity can contribute to this disorder and so I have been hesitant to touch the plant medicine again even though I have considered microdosing. I know my nervous system is extremely sensitive. The last several months to a year I have been at my lowest and the idea of doing all this work to heal is hard to covercome. Atm I cannot work and I don’t leave my house or couch much. I say no to all social events and feel so isolated and truly worthless. I know my emotional wounds that create this sickness revolve around feelings of unworthiness, ugliness, a fear or being seen and that I cannot be confident and also my abandonment wounds. I also had an experience when I connected deeply to my body and I asked it where it held the trauma and it said “my teeth and from getting braces” atm the correlations don’t make sense but I’ve come so far and learnt so much. I known this isn’t the end even though I’ve felt like my life was meant to end many times. Thank you for sharing you’re wisdom, journey and knowledge. I may be a bit behind you in mine but it gives me hope to heal because I AM WORTH IT
Thank you for sharing this. The best thing to ever happen for me was my doctor told me I would never get any better, wouldn’t recommend physical therapy even. And my collar bone was closing my airway. I was sure I was going to die or worse if my doctor was right so I set out to get better or die trying. Dr Farias work was a gleaming beacon of hope. I found his patient that could dance and decided to try it for myself. Holy smokes let’s see if I can lift weights with music on. Enter Rocky mode. I kept training in the gym and making progress but it was mostly just better quality of life, I was still far to sick to enjoy living. I had a couple blotters of acid from years earlier and I started microsdosing. Everything got so much better! On the very first day the craziest thing happened. I was sitting all hunched forward and thought “my back hurts, I’m gonna sit up.” I totally forgot that I couldn’t and the movement just happened. Breakthrough! Everything I had been trying with the painful attempts to relearn movement finally came together in a powerful way. I also had a wild transcendent experience that day where a voice from heaven began verbally instructing me on how to use forgotten parts of my body. Wow. Decided to see what DMT was all about but was very afraid of it. Played around with baby doses then broke through and something big happened. I could feel all the nerves that cause dystonic reactions, but I wasn’t reacting to them. They weren’t comfy, but they didn’t hurt for the first time in years. And my tremors weren’t going off. Bingo. My brain is making the disease! I also spent some time staring in the mirror once I was able and it was like “ohh I get it, my necks all screwed up.” My body realized it need to fix its whole structure. That night changed something. The pain never came back the same way. When it tried as normal sensations returned, I remembered that I was in control of my perception of it and after about a month of keeping my mind thinking this way it stopped trying to come back making those areas useable again. Same with tremors tho they can still go off from time to time. It’s not indefinite and I’ve learned actually indicates my brain is trying to move more skillfully than I’m able at the moment and know better movements are coming. I saw so much potential so I tried ayahuasca. I actually only got about half a dose down before I started to feel it so I forgot the rest and went for a walk. I could feel my back aching and wanting to give out on me like always but I noticed something. My brain started showing me it was actually my vision that was twisting up, revealing a big problem I hadn’t been previously able to see. The chaos grew until it swallowed itself up, the world went dark for a split second and when it came back it was totally different. I could see everything! A distinct left and right side, everything in between, and I could tell where I was! Something really changed that night. My brain started to heal my double twisty seizure vision. And after I settled down indoors I really felt my mind start to reconnect to the muscles in my neck. I had very distinct feelings of the trauma that had been keeping me out beginning to heal and it was just easy to exist in my body without my senses all causing pain. That ayahuasca experience was 2.5 months ago. I am now seeing that ALL of the damage can heal. My brain seems to believe it needs to rebuild my jaw/tmj and c2 alignment and is healing everything which prevents proper alignment. Now at my worst my head was fully pulled to my chest and my spine got severely deformed. At this point, dystonic symptoms aren’t keeping me from doing anything, it’s just the problems that resulted from years of untreated dystonia giving me trouble at this point. But I am getting over it completely day by day. I as well tried doing therapy for trauma and saw the potential for it to be really helpful but I don’t really click with my therapist. Being open with some real close friends that are non judgmental has really been very helpful But I like to think not doing so good with talk therapy was a good thing. I just started spending more time with friends or playing my guitar. I have some friends that like to pick me up cuz they know driving can be a pain and those outings are very productive. I feel like it’s just time to have new experiences now. If anybody is seeing this and wonders if they can recover the answer is YESSS! The lessons I learned tell me we all have the intrinsic ability to recover from dystonia, I do not care what the current beliefs about recovery are. Science is behind, everything I learned that works was here on UA-cam, discovered mostly by dystonia sufferers that decided to figure it out. I really believe if we all keep sharing our experience it won’t be long until a dystonia diagnosis means something very different
Wow friend, what an amazing story!! I am collecting case reports on psychedelics and dystonia for possible publication in a medical journal, would you be willing to share your story anonymously? If you are, please shoot me a message through www.hopefordystonia.com 🙏😊 keep up the great work!!
@@hopefordystonia awesome I will definitely check that out a little later today! You’ve really inspired me to film my first UA-cam video and share my experience openly. I’m so glad I found your channel, you are doing something truly wonderful with it!
Wow. Your experience has inspired me and filled me with a lot of hope. So my thanks. Personally for me, visual contemplation works. As a part of eye exercises they often ask us to start by seeing at some object/point close by, and then gradually to move our vision farther into the distance and then come back again at the point of start. So what I also add into the above exercise is to look at things found in nature. To consider, to contemplate upon them. And then gradually expanding the context of that very object to its larger surrounding and context... I find that when I find meaningfulness in something my mind goes calmer and less agitated. What follows instantaneously is that the neck twisting also stops soon after.
@@seerona-wa-yaraona that is interesting to hear you’re doing exercises for your eyes, most people don’t even realize how involved they are. It’s actually been a really big piece of the healing for me, learning to let go of what they think they are seeing in order to take in what’s actually there. Curiously this summer I was out backpacking and had a moment where everything just worked right. I had climbed up to a beautiful outlook and when I turned around some berries in the trees caught my attention. I think I’d forgotten my dystonia while looking out haha. Without thinking first my eyes went up together and then the neck muscles with them and my brain was just so impressed with itself. I sat there going “omg this is how they are supposed to work!” I was so happy. It’s crazy how all the information I needed to heal was out in nature. Every morning i go for a long walk and recently I’ve been pausing on this beautiful ridge to look out across the gorge. I feel so much of the goofy signals just stop when I do this. Out of all the exercises a doctor might tell you to do, it’s crazy how just getting out and letting go are really the very best thing for us. I’m so glad to hear you’re off seeing what’s possible for yourself. It’s a daunting task at first but it should actually end up being a really fun adventure with lots of new discoveries about who you are. This guy is NOT crazy lol give it all you have and things WILL get better. Just be patient is the best advice I can give. Very good luck to you!
Thank you. This really gives me hope. I’ve always thought trauma and food have something to do with it. I’m 73 years old. When I was 13 I experienced a traumatic existence at home and at school. Till I was 20 years old. I started shaking my head and was always fearful. I describe that period in my life as war time. I lived in an toxic war zone for seven years. When I was 18 years old a freudian psychiatrist told me I had penis-envy. So? That was it. It made me very depressed. I asked for help and this person threw some ancient term at me. Was I cured? Of course not. Sixty years later I’m finally found a fantastic trauma-therapist who takes me seriously. All those psychiatrist, psychologist, neurologists treated me as if I was unwilling to get better. I even developed an eating disorder and got suicidal. Even then they told me I was unwilling to get better. Can you imaging saying that to a person who is totally desperate? Or they said: ‘You have to forget about your past. Behavior therapy, that’s what you need.’ It was all so humiliating. Somehow, because I believed in myself, I survived. In spite of all those ‘experts’. Thank you so much for this video. My life has only have a fifth of the quality it should have had. I’d rather have an honest specialist say: ‘I’m sorry. I don’t know how to help you.’ In stead of so-called experts telling me it’s all my fault. It’s really sickening especially because I was in a very vulnerable position. Maybe there’s still hope for me having some quality in the years I have left.
What an incredible story! Thanks for sharing. I don't have dystonia but I have acquired really bad spasms of my neck after a laser surgery of my cervical spine back in August 2023. I travelled from Australia to the Deukspine Institute in Florida to have my C5-C6, C6-C7 discs decompressed to freeup my C6,C7 nerves on the left side. The surgery was a total failure becuase I woke up with a dropped head syndrome, severe tighhtness of of my neck with very limited motion. Since I have come back last year my neck has been getting very tight, cramped. Not only this but also feel lots of tightness of my traps, shoulders, back muscles. I am also getting numbness of my legs, feet accompanied by painful pins and needles. In the last 4 months now my right side has become symptomatic and get a lot of pain there too. Sleep is impossible nearly every night. I used to be a very fit person riding push bikes and going to the gym from 2002 to 2022. Unfortunately I have been run over by cars while riding in the bike lane in the last 11 years. My body is in constant pain, I am depressed due to this tightness of the neck. I have seen lots of physios, doctors, specialist but no one can help me except for prescribing oppioids, neuropathic medicines and antimflammatories which are not healthy for the body in the long term. Recently I had to reduce my walking activities and even gentle stretches cause me pain. I am hoping that I may learn something from your experience. Alfred
Thank you for sharing your story. There is much to digest here. Federico Bittis Ted talk is also worth watching. I have lived with Dystonia for over a decade now but most days you wouldn't even know I still had it. I too was incapacitated for over a year, but a holistic approach to my wellbeing including lifestyle changes in my diet and social habits(keto and abstinence) has seen the symptoms reduce to manageable levels. While I fought it, I lived in misery. Accepting dystonia as part of my life was the first step. I take a small dose of baclofen but my main therapy is physical and spiritual. (Meditation) There appear to be a number of routes out of this pain this horrible condition causes. They need to be shared.
I'm amazed and inspired by your journey Fede. I've a strong sense that you can help me and I've booked my 30 minutes for Monday. Feeling hopeful about my issues in a way that I haven't for years. Thank you.
Thank you very much brother for posting this video. Right now my son in CCU (critical care unit) for dystonia. In Toronto Canada. Last 10 years he has dystonia. He is on lots of neurological medications which is not helping him.
You are amazing. I am at yout fb- site and it is brilliant. Thank you so very much to give us hope and support us by sharing your journey. I also was thinking about going to Korea. There is a Dr J., expert, maybe you were there ir sth. similar. I was thinking that what you describe will happen, not lasting long and it is very expensive to go there. I can so much relate to what you thought about how to heal. And I am so very thankful that you share your solution. It makes Sommer so much sense. I never was into 🍄, no expirience, thank you again for sharing 🙏🙏🙏🙏 God bless you.
Thank you so much for this video!. I'm 59 years old and I remember since my late twenties having this twisting and muscle spasm on my right side, the TMJ dysfunction also that started in high school and is stronger on the right side. I do infrared sauna, stretching massage therapy, acupuncture red light therapy.. I really just want a Botox shot in that one muscle spasm just to get relief. It's just chronic. I go to sleep with it. I wake up with it. I can stop it from twisting but it doesn't stop the pain. Anyway, Just found you on this video. And will now have more options. Oh and let's not forget. I had scoliosis surgery when I was 12 so I have a rod in my back from t1 to about l4 which I imagine contributed somehow to this too
Thank you for sharing ☺️ you can get better! Watch the video at www.hopefordystonia.com/welcome if you haven’t already to get an idea of the way forward
Oh my gosh! Your story is almost exactly my story. I'm 58 and I had scoliosis surgery when I was 12 also. I have a Harrington rod in my back. I believe mine is from t2 to l4! This is too much of a coincidence! I was diagnosed with dystonia when I was 24. I have told the doctors repeatedly I thought it was because of the surgery! One of them yelled at me and told me that I needed to calm down because I was shaking. I just recently bought a red light panel and have been working on stimulation of the vagus nerve.
I have periods of whole body dystonia. It's very painful and stressful. I do suffer from severe spinal deformities which pull and push on my nerves as well as stretching and constricting muscles tendons and ligaments. Lately I have been having sleepless nights because my body is stiff. I'm not sure what to do.
Hello, my Dystonia was mostly not visible but you can see some of my visible symptoms in the article on that topic on hopefordystonia.com in the knowledge base section
@@hopefordystonia btw I have Generalized dystonia syndrome. It's very severe and painful. I'll be doing DBS surgery soon. I hope I'll have a successful one.
This is the 2nd time i see this video. The first time i came upon it, maybe a year ago, (i had just discovered i have dystonia from utube after googling "head turns left involuntarily" Lol!). I first watched videos of two different men, one in Sweden and one in the UK, who tell their own dystonia story, and with both of them i could recognise that they have what i have. This was a relief, to know others have this condition and that it has a name and maybe i'm not crazy(!)...and they both seemed like such lovely, sensitive, kind and intelligent people. When i came upon this vid of yours, i felt mistrust and impatience and quickly dismissed you as a possible scammer, because i saw no bodily signs on you that you had ever had this condition. Now, watching for the 2nd time, i guess i'll get a fresh take (i have only scanned and heard you say a few things so far).
I understand the idea of healing from within, but how can you change the input that leads to maladaptive patterns if the input comes from occlusion? teeth are fixed so unless you change them from outside how are you going to change that input from within? (I've also had bad experience with orthodontics that gradually worsened my condition)
Thank you for your excellent question, Marco! That’s where most people trip up and fail: they think that because the dysfunctional input comes from the teeth, they have to start by working on those. That approach has a very low success rate because it’s nearly impossible for an external person to figure out the occlusal configuration you need. Instead, one must work to understand the patterns in the cranial nerves, work to normalize them through targeted stimulation, detox, trauma healing etc. and they will automatically begin to bring the jaw to a more functional position as the muscle tone evens out. You can *then* begin to work with a skilled and open minded dentist to register the ever improving occlusal configuration on a splint or composite. So it starts with regulating the nervous system, not the teeth. Make sense?
@@hopefordystonia Ha perfettamente senso! non ho idea di come potrei trovare un dentista abbastanza illuminato e pazzo da aiutarmi in questa impresa però hahah, soprattutto in Italia
Vedrai che una volta che cominci a guarire, quella seconda parte col dentista diventa molto più secondaria. E poi trovare un dentista sufficientemente aperto non è difficile come sembra, persino in Italia 😊
In a few months I was able to do things that were unthinkable before 😊 It’s no indication of how long it will take for others though - it depends on a lot of factors
Mushrooms put my Dystonia into remission for 6 years. Some insane back to back trauma have brought it back this summer of 2024. I’m microdosing again but it isn’t helping so I am going to heroic dose once or twice in December and will report back.
Hola! Una ortodoncia para mejorar la mordida puede ser negativa teniendo distonia? Y si se mejora la atm con algún tratamiento recomendado por el cirujano maxilofacial, pueden mejorar los síntomas? También hay gente q se recoloca la primera vértebra pero no se si teniendo tensiones en el cuello, puede ser algo que produzca un alivio temporal únicamente, que opina?
Hello, this is all very delicate and every little change can create trouble. If you’d like to chat more you can always book a time to speak at www.hopefordystonia.com
I have something like that yours. My jaw one day come out from the mandibula place and i get serious pains from that with the years because mine jaw was not where should be on the mandibula and still is me the same that condition. Mine teeths from one side missing and i cant close and mine mouth good and all that leading to pulling and in the neck spinning on the neck and smashing on the neck bones in it!!! That is many painful condition!!! Also in mine brain i feeling some difference between the two sides on power in it and with the time becoming more bad. Also i have falling on the neck at left side and spinning on right on the head. Other thing what i have is paralyzing on the two sides of mine face and head and like is and in mine brain, all that is from pulling on mine jaw, and she cant to go on place alone need doctors to put her on place. Yes but i going on doctors they cant to put it on place because not seeing mine case serious and saying that nothing not have me. Two doctors say that mine mandibula is not on place but nothing not do on the question. That amaze me why not wants to cure me? And i am been on many doctors and are laugh me all they call me psycho crazy and many things more and i just suffering many bad from one Jaw what is not on place. Bad in the case is that the doctors not helping me and should, that is them the job, and that they need to doing because they are there for that to helping on the people and not to getting theyr money only, right!!! Also those days mine neck condition become so bad that can and to kill me, still not knows what will happen with me from that. But i will not giving up because that is mine life and i need to save it and not to waiting just to kill me one jaw and i to taking all pains years without cure because not have one human who to wants to helping for that on other human to be cured on all ways what are possible, and cure for all have i am shure in that, just need to searching and to found it. On me need me just one jaw repairing someone to put me the jaw on place and if need to make operation to repair the mandibula. Also i know one doctor who can put jaws on place many easy but i cant to do it like him his name is Doctor Rahim and he is the most good chiropractor in the world. He can to put all bone on her place even to repair wrong form on the nose. :D Many good chiropractor is believe me!!! But i cant go to him because i not have money so much for that trip and cure from him need and for hotel money many money wants to go to him and to repair you. The things are many bad when you are really sick know what is you but no one not believing you and not wants to help you to cure yourself. E that is the bad in the case. But i will not giving up will searching ways to repair mine jaw before to am die. :D if someone can to help me will am happy if do it. :D And thanks dude for the video what you are make, i like what you saying you re good human!!!
Thank you for sharing this - you can get better!! 💪 Visit www.hopefordystonia.com/welcome and access the Hope for Dystonia Recovery Roadmap to get started 🙏
Hello my husband have general dystonia started July 2021 up to now I can'nt afford for long time medication can I ask you if you have foundation please help my husband I don't know where I get the money. Thank you
@@jimmyjatinjim only for as long as your nervous system doesn't contract the muscles back into an asymmetrical pattern and pull your vertebrae out of alignment again. The solution is in the nervous system, not the vertebrae
I am 14 years old and have acute musician's focal dystonia and know it is a very complicated thing but from a logical, scientific, and objective perspective, since musician's focal dystonia, as a condition truly is not actually damage to the brain but a maladaptive rewiring of the brain and given the fact that the brain can always adapt and rewire itself through time as long as the brain has not suffered any type of damage cellularly or structurally, it seems that through consistent and deliberate retraining that shows progress in the recovery journey, the brain's neuroplasticity can eventually rewire the brain back to normal and overcome deeply ingrained changes/neuroplastic limits as dystonia does not actually cause any structural or cellular damage to the brain that prevents neuroplasticity from overcoming these challenges and given the fact that the brain is always technically able to continue rewiring itself. It can be extremely challenging and take a very long time to achieve a full 100% recovery with no dystonic symptoms and sensations from effective retraining but from an objective and scientific perspective, it seems certainly possible. What seems variable for each individual is the rate of recovery and the time it takes rather than the actual possibility of a full 100% recovery, which logically seems to be guaranteed with effective retraining and time considering neuroplasticity's amazing abilities to overcome deeply ingrained and even hard to reverse corrupted neural pathways and the fact that dystonia does not actually cause damage to the brain that prevents neuroplasticity from overcoming these challenges like a stroke or Alzheimer's would. So in conclusion, it seems that as long the retraining results in progress in the recovery process and the retraining is consistent, then disregarding the rate of recovery and time it takes, eventually, the brain will rewire back to normal. What differs for each individual for this challenging and often unpredictable journey is the rate and time it takes to achieve the full 100% recovery. Sidenote: I used a method of piano technique called the Taubman approach and have seen truly significant and noticeable improvement. I started retraining a week ago and progress felt almost instantaneously! Never give up!!!!!!
Hey there, it’s not about just taking mushrooms, it’s about teaching your brain a functional pattern! Reach out on www.hopefordystonia.com to learn more
what about for a toddler. I have a 3 year old drs wanted to give antipsychotics bc they suspected, but wasn't sure, but suspected he may have movements associated with dystonia . How do i help him if he does have it. they say its less likely to recover the younger it onsets bc the muscles or brain remembers and functions this way for way longer before treatment can be administered
@@hopefordystonia I'm not sure. They haven't done any formal testing on him. They clinically diagnosed him based off of what they were seeing him do and what I was describing... We just got home from being in the hospital they suggested an outpatient EEG which we still have to schedule now that we are home the movements are still persistent and I'm really starting to believe he does have some type of movement disorder and I don't know what caused it.. or which direction to take this because he is also diagnosed with ASD level one... So he's picky about what he eats he will take a chewable supplement though.. but him consciously doing things to change his neuro pathways doesn't seem like an option at this age so I don't know what to do for him
I believe an antipsychotic caused mine. I am in so much pain and was basically laughed at during my admission to Beaumont Dearborn last week. They tried to overdose me and kill me. I am not kidding you. They had me in a trauma room and I was choking because my neck was pulling my head so far to the left they had to suction sexreations but kept blowing my veins trying to get an IV 11 times. So then they begin assuming!!! I was a drug addict. My arms were perfectly clear but skinny because I was told early in the year I had Graves’ disease. I have lost all my healthy body weight since this began. I am 5’6” 45 years old and weigh 102 lbs now. At the same time I was diagnosed with Graves I had an ER vidit fir horrible neck pain and my head moving and being stuck. I was told I had spasmodic Torricollis. This happened in April-May. I’m now in full body spasms affecting my head, face, jaw, neck, chest, abdomen, pelvis, legs and feet. And don’t forget my arms. My left shoulder pulls inward. I’m getting caught in a perpetual spasm on my left side. I cannot sleep. I cannot get help. My admission was pointless because my MRI (head, C-spine, and T-spine) were “normal” other than the fact that my neck was completely bent in the photos and they just told me you have dystonia and sent me home with a muscle relaxer which is not helping me. The only med I think helping me is klonopin. And they’re threatening everyone they will take this away. I’ve been on it for 17 years and I need it. I was diagnosed with trigeminal neuralgia in 2011 and lost two good teeth to it. I had a recent fall and smacked my chin on the bathroom sink and broke 3 teeth. It’s gotten much worse since then but I did t have a brain injury. But when I go back and look I started having muscle jerking back in the early 2000s. Odd neck jerking with the leg on the opposite side of my neck jerk woild jerk immediate after my neck. Almost sequentially. I didn’t know what it was and thought it was maybe the beginning of Parkinson’s. That’s what I fear I have now. I am speaking against that. I pray there is something, someone that can help me. Thank you for sharing this. I’m going to actively try to do this. I’m always co fused what to do with my jaw bone. I’m now biting my tongue with my left teeth and sound funny talking. It’s as if my tongue has moved. Or has it never my jaw. My face looks misaligned not as if my jaw is pushing toward my left shoulder. I cannot sleep. This comes in so strong when at rest. Anyone have any tips? Anyone try charlottes web? I’m so afraid of mushrooms and psychedelics.
@@hopefordystoniahelp me. I feel like I’m dying. It’s taking away all my muscle control. Choking me. Twisting my chest to where it makes my breasts look out of place on my body. It’s twisting my abdomen and moving my insides. Same with pelvis and is affecting my urination and BMs. Feels like it moves a muscle to cover those areas and I urinate sideways and cannot pass a BM. It involves my legs and arms, hands and feet go tingly and numb and feel like the muscles are being ripped away from my palm and souls. My eyes are being HIGHLY AFFECTED. I can’t see and reading is so hard I am having to listen to audiobooks. I’m biting my tongue with my left teeth. I was told in 2011 I had trigeminal Neuralgia due to secere left sided face pain not before I lost my back two (healthy) molars on that side because they hurt so bad. I don’t think it is trigeminal neuralgia at all. You’re video speaks to my stress in my life (possible divorce). I was doabised with Graves’ disease earlier this year and am down to 100 lbs from150+. A normal weight for my height and age as a 45 year old woman. I fear I have developed Parkinson’s. I cannot see a neurologist until end of December. I need help. But I have CPTSD. I have had two suicide attempts this year, one for which I was not awake (due to the side effects of a psych med I was put on that I did not need!). I injured my face and broke three teeth from this fall on September 27. I had all symptoms before this fall tho. Just not as much as now. They started 27 days after my release from the hospital. About 43 dss as us after the injury it got worse. I have a vaccine injury from 2007 and was diagnosed with Systemic Lupus and fibromyalgia in 08. I do t know where to turn and as I said I fear the use of psychedelics. But I’m willing to try anything at this point. I’m a wife and mother of 3. I can’t take this pain and I never sleep. I feel so alone. I have trouble breathing too. From my neck and my chest feels constricted. So badly one night my husband was driving me to the ER because I couldn’t breathe and thought I was having a heart attack. I made him stop at the fire station because it got so bad I couldn’t get a breath in my chest felt like an elephant was sitting on it. I finally got myself calm with his help and breathed thru it. The fireman did a EKG that was normal other than a fast heart rate. Idk if any of this makes sense to you. I really need help. I’m losing hope from my lack of sleep and the constant pain.
Questions!: 1) My 8yo has CP from HIE at birth. Breech baby who aspirated, didn't breathe for 18 minutes. Cooling bed for first 3 days worked wonders. Walking talking, just fine motor and speech is hard. His hands are dystonic while his legs are more spastic. Do you think you're more methods could help his dystonia? Also we just found QNRT therapy. I am wondering if we resolve some of the first trauma if some of his nervous system protection will lessen. It's worth every effort.
Thank you for your comment. It did not come up in any CT scans and a lot of the asymmetries I have dealt with are verifiably genetic, induced by physical trauma etc. and respond well to neuromuscular repatterning and the other steps I outline
I was prescribed long term benzo and antidepressants for 13 years by these evil doctors. I left them cold turkey and since then i vr dystonia and left side body is tight pulls n my spine is deformed . 2.5 years am bedridden lost my life my career. Now no oone here in india understands. I ve a six year old son. Now i have no support no money. Starving as i cant work nor does govt help.i would love to have the mushrooms n help but i dont knoe if i can afford. Am giving up😢
My right side is so underused to the point that my smile is cockied and eye is closed more. My whole right side feels “dead” . My head is pulling to the right
Thanks for your comments, Thomas! You can get better ❤️🩹 watch the video at www.hopefordystonia.com/welcome to get a better understanding of the way forward and let us know what you think!
Visit www.hopefordystonia.com/welcome and access the Hope for Dystonia Recovery Roadmap!
I am SO grateful to have found you and you’re channel. I feel more understood and seen then ever. Since I was 14 I began to show symptoms of Cervical Dystonia. It was on and off for several years after that and I had no idea what was happening to me. It was devastating and I shamed myself so much (this is something I still am yet to overcome) but after it started getting terrible after a traumatic emotional event I finally opened up to the Drs..... they all had no idea what was wrong with with me and over a year ago I discovered Cervical Dystonia and cried because I KNEW that’s what I experience. Since then I told my Dr but she never looked into it. I don’t think she’s heard of it so she blew me off and labelled it as Fibromyalgia.. in this time I have discovered that yes I need to find ways to detox, address my trauma and implement neuroplaticity. I started to lose more function after a toxic relationship and heavy breakup. During this relationship I had a drug induced psychosis on 🍄 (however during that trip there was a correlation between having braces during my childhood and experiencing severe pain). I learned that neurotoxicity can contribute to this disorder and so I have been hesitant to touch the plant medicine again even though I have considered microdosing. I know my nervous system is extremely sensitive. The last several months to a year I have been at my lowest and the idea of doing all this work to heal is hard to covercome. Atm I cannot work and I don’t leave my house or couch much. I say no to all social events and feel so isolated and truly worthless. I know my emotional wounds that create this sickness revolve around feelings of unworthiness, ugliness, a fear or being seen and that I cannot be confident and also my abandonment wounds. I also had an experience when I connected deeply to my body and I asked it where it held the trauma and it said “my teeth and from getting braces” atm the correlations don’t make sense but I’ve come so far and learnt so much. I known this isn’t the end even though I’ve felt like my life was meant to end many times. Thank you for sharing you’re wisdom, journey and knowledge. I may be a bit behind you in mine but it gives me hope to heal because I AM WORTH IT
Thank you for sharing this! You are worth it and you can do it!! 💪
Thank you for sharing this. The best thing to ever happen for me was my doctor told me I would never get any better, wouldn’t recommend physical therapy even. And my collar bone was closing my airway.
I was sure I was going to die or worse if my doctor was right so I set out to get better or die trying. Dr Farias work was a gleaming beacon of hope. I found his patient that could dance and decided to try it for myself. Holy smokes let’s see if I can lift weights with music on.
Enter Rocky mode. I kept training in the gym and making progress but it was mostly just better quality of life, I was still far to sick to enjoy living.
I had a couple blotters of acid from years earlier and I started microsdosing. Everything got so much better! On the very first day the craziest thing happened. I was sitting all hunched forward and thought “my back hurts, I’m gonna sit up.” I totally forgot that I couldn’t and the movement just happened. Breakthrough! Everything I had been trying with the painful attempts to relearn movement finally came together in a powerful way. I also had a wild transcendent experience that day where a voice from heaven began verbally instructing me on how to use forgotten parts of my body. Wow.
Decided to see what DMT was all about but was very afraid of it. Played around with baby doses then broke through and something big happened. I could feel all the nerves that cause dystonic reactions, but I wasn’t reacting to them. They weren’t comfy, but they didn’t hurt for the first time in years. And my tremors weren’t going off. Bingo. My brain is making the disease! I also spent some time staring in the mirror once I was able and it was like “ohh I get it, my necks all screwed up.” My body realized it need to fix its whole structure. That night changed something. The pain never came back the same way. When it tried as normal sensations returned, I remembered that I was in control of my perception of it and after about a month of keeping my mind thinking this way it stopped trying to come back making those areas useable again. Same with tremors tho they can still go off from time to time. It’s not indefinite and I’ve learned actually indicates my brain is trying to move more skillfully than I’m able at the moment and know better movements are coming.
I saw so much potential so I tried ayahuasca. I actually only got about half a dose down before I started to feel it so I forgot the rest and went for a walk. I could feel my back aching and wanting to give out on me like always but I noticed something. My brain started showing me it was actually my vision that was twisting up, revealing a big problem I hadn’t been previously able to see. The chaos grew until it swallowed itself up, the world went dark for a split second and when it came back it was totally different. I could see everything! A distinct left and right side, everything in between, and I could tell where I was! Something really changed that night. My brain started to heal my double twisty seizure vision. And after I settled down indoors I really felt my mind start to reconnect to the muscles in my neck. I had very distinct feelings of the trauma that had been keeping me out beginning to heal and it was just easy to exist in my body without my senses all causing pain.
That ayahuasca experience was 2.5 months ago. I am now seeing that ALL of the damage can heal. My brain seems to believe it needs to rebuild my jaw/tmj and c2 alignment and is healing everything which prevents proper alignment. Now at my worst my head was fully pulled to my chest and my spine got severely deformed. At this point, dystonic symptoms aren’t keeping me from doing anything, it’s just the problems that resulted from years of untreated dystonia giving me trouble at this point. But I am getting over it completely day by day.
I as well tried doing therapy for trauma and saw the potential for it to be really helpful but I don’t really click with my therapist. Being open with some real close friends that are non judgmental has really been very helpful
But I like to think not doing so good with talk therapy was a good thing. I just started spending more time with friends or playing my guitar. I have some friends that like to pick me up cuz they know driving can be a pain and those outings are very productive. I feel like it’s just time to have new experiences now.
If anybody is seeing this and wonders if they can recover the answer is YESSS! The lessons I learned tell me we all have the intrinsic ability to recover from dystonia, I do not care what the current beliefs about recovery are. Science is behind, everything I learned that works was here on UA-cam, discovered mostly by dystonia sufferers that decided to figure it out. I really believe if we all keep sharing our experience it won’t be long until a dystonia diagnosis means something very different
Wow friend, what an amazing story!! I am collecting case reports on psychedelics and dystonia for possible publication in a medical journal, would you be willing to share your story anonymously? If you are, please shoot me a message through www.hopefordystonia.com 🙏😊 keep up the great work!!
@@hopefordystonia awesome I will definitely check that out a little later today! You’ve really inspired me to film my first UA-cam video and share my experience openly. I’m so glad I found your channel, you are doing something truly wonderful with it!
Wow. Your experience has inspired me and filled me with a lot of hope. So my thanks.
Personally for me, visual contemplation works. As a part of eye exercises they often ask us to start by seeing at some object/point close by, and then gradually to move our vision farther into the distance and then come back again at the point of start.
So what I also add into the above exercise is to look at things found in nature. To consider, to contemplate upon them. And then gradually expanding the context of that very object to its larger surrounding and context...
I find that when I find meaningfulness in something my mind goes calmer and less agitated. What follows instantaneously is that the neck twisting also stops soon after.
@@seerona-wa-yaraona that is interesting to hear you’re doing exercises for your eyes, most people don’t even realize how involved they are. It’s actually been a really big piece of the healing for me, learning to let go of what they think they are seeing in order to take in what’s actually there.
Curiously this summer I was out backpacking and had a moment where everything just worked right. I had climbed up to a beautiful outlook and when I turned around some berries in the trees caught my attention. I think I’d forgotten my dystonia while looking out haha. Without thinking first my eyes went up together and then the neck muscles with them and my brain was just so impressed with itself. I sat there going “omg this is how they are supposed to work!” I was so happy.
It’s crazy how all the information I needed to heal was out in nature. Every morning i go for a long walk and recently I’ve been pausing on this beautiful ridge to look out across the gorge. I feel so much of the goofy signals just stop when I do this. Out of all the exercises a doctor might tell you to do, it’s crazy how just getting out and letting go are really the very best thing for us.
I’m so glad to hear you’re off seeing what’s possible for yourself. It’s a daunting task at first but it should actually end up being a really fun adventure with lots of new discoveries about who you are. This guy is NOT crazy lol give it all you have and things WILL get better. Just be patient is the best advice I can give. Very good luck to you!
Hi. Can I message you?
Such a revolutionary approach to healing! So gentle and respectful of our bodies and minds! Thank you Fede.
Thank you for your kind comment, Claudia!
Thank you so much! I feel so hopeful. Looking forward to the link!
So happy it resonated! The video is at www.hopefordystonia.com/welcome
Thank you. This really gives me hope. I’ve always thought trauma and food have something to do with it. I’m 73 years old. When I was 13 I experienced a traumatic existence at home and at school. Till I was 20 years old. I started shaking my head and was always fearful. I describe that period in my life as war time. I lived in an toxic war zone for seven years. When I was 18 years old a freudian psychiatrist told me I had penis-envy. So? That was it. It made me very depressed. I asked for help and this person threw some ancient term at me. Was I cured? Of course not. Sixty years later I’m finally found a fantastic trauma-therapist who takes me seriously. All those psychiatrist, psychologist, neurologists treated me as if I was unwilling to get better. I even developed an eating disorder and got suicidal. Even then they told me I was unwilling to get better. Can you imaging saying that to a person who is totally desperate? Or they said: ‘You have to forget about your past. Behavior therapy, that’s what you need.’ It was all so humiliating. Somehow, because I believed in myself, I survived. In spite of all those ‘experts’. Thank you so much for this video. My life has only have a fifth of the quality it should have had. I’d rather have an honest specialist say: ‘I’m sorry. I don’t know how to help you.’ In stead of so-called experts telling me it’s all my fault. It’s really sickening especially because I was in a very vulnerable position. Maybe there’s still hope for me having some quality in the years I have left.
Thank you so much for sharing this, Hettie! There is indeed hope to get better at any age with the right kind of support and guidance ❤
What an incredible story! Thanks for sharing. I don't have dystonia but I have acquired really bad spasms of my neck after a laser surgery of my cervical spine back in August 2023. I travelled from Australia to the Deukspine Institute in Florida to have my C5-C6, C6-C7 discs decompressed to freeup my C6,C7 nerves on the left side. The surgery was a total failure becuase I woke up with a dropped head syndrome, severe tighhtness of of my neck with very limited motion. Since I have come back last year my neck has been getting very tight, cramped. Not only this but also feel lots of tightness of my traps, shoulders, back muscles. I am also getting numbness of my legs, feet accompanied by painful pins and needles. In the last 4 months now my right side has become symptomatic and get a lot of pain there too. Sleep is impossible nearly every night. I used to be a very fit person riding push bikes and going to the gym from 2002 to 2022. Unfortunately I have been run over by cars while riding in the bike lane in the last 11 years. My body is in constant pain, I am depressed due to this tightness of the neck. I have seen lots of physios, doctors, specialist but no one can help me except for prescribing oppioids, neuropathic medicines and antimflammatories which are not healthy for the body in the long term. Recently I had to reduce my walking activities and even gentle stretches cause me pain. I am hoping that I may learn something from your experience. Alfred
Thank you for sharing, Alfred! Feel free to book a free consultation on hopefordystonia.com, I’d be happy to chat. Take care in the meantime! - Fede
I have this tightness too...hard to explain
Does your neck get tighter each day?
Thank you for sharing your story. There is much to digest here. Federico Bittis Ted talk is also worth watching. I have lived with Dystonia for over a decade now but most days you wouldn't even know I still had it. I too was incapacitated for over a year, but a holistic approach to my wellbeing including lifestyle changes in my diet and social habits(keto and abstinence) has seen the symptoms reduce to manageable levels. While I fought it, I lived in misery. Accepting dystonia as part of my life was the first step. I take a small dose of baclofen but my main therapy is physical and spiritual. (Meditation) There appear to be a number of routes out of this pain this horrible condition causes. They need to be shared.
Thanks for sharing - you’re on the right track!
Thanks for d video. Hope for a better life.
It’s very much possible!
I'm amazed and inspired by your journey Fede. I've a strong sense that you can help me and I've booked my 30 minutes for Monday. Feeling hopeful about my issues in a way that I haven't for years. Thank you.
Thank you for your kind words, Diarmid, I look forward to starting this journey together ✨
This was so helpful to me. Thank you.
Glad it was helpful! I hope this is the beginning of a beautiful healing journey ❤️🩹
Thank you very much brother for posting this video. Right now my son in CCU (critical care unit) for dystonia. In Toronto Canada. Last 10 years he has dystonia. He is on lots of neurological medications which is not helping him.
That sounds really challenging, I am sorry to hear! Feel free to reach out on hopefordystonia.com if you want to talk ❤
I'm sorry to hear about your son 🙏 how is he doing now ? How did this start for him ? Has anything helped him ?
That is why I refuse drugs as treatment and stop Botox injections since after 3 years I did not see much benefits
Wow mind-blowing, 🤯 thanks for sharing!❤
Thanks for watching 😄
Hi Federico, that is fascinating. I can't wait for more videos 😊
Thank you 😃 More videos coming soon on mushrooms, trauma, detox and more!
@@hopefordystonia Perfect 👌
Thankyou for doing this video to bring hope to others ❤
Thank you for watching 🙏❤️
You are amazing. I am at yout fb- site and it is brilliant. Thank you so very much to give us hope and support us by sharing your journey. I also was thinking about going to Korea. There is a Dr J., expert, maybe you were there ir sth. similar. I was thinking that what you describe will happen, not lasting long and it is very expensive to go there. I can so much relate to what you thought about how to heal. And I am so very thankful that you share your solution. It makes Sommer so much sense. I never was into 🍄, no expirience, thank you again for sharing 🙏🙏🙏🙏 God bless you.
Thank you so much for your kind words ❤️ many blessings to you!
Travel is really expensive and unnecessary. I had good success with brain retraining and a local chiropractor who believed in healing. You got this!
Fede this is fascinating! Of course you would not settle with a diagnosis ❤. How wonderful you can now share it with others
Thank you Andrea ❤️ hope all is great on your end! Big hugs to you and the fam!!
Amazing! You’re speaking my language!
So happy it resonates 🙏❤️
Thank you so much for this video!. I'm 59 years old and I remember since my late twenties having this twisting and muscle spasm on my right side, the TMJ dysfunction also that started in high school and is stronger on the right side. I do infrared sauna, stretching massage therapy, acupuncture red light therapy.. I really just want a Botox shot in that one muscle spasm just to get relief. It's just chronic. I go to sleep with it. I wake up with it. I can stop it from twisting but it doesn't stop the pain. Anyway, Just found you on this video. And will now have more options. Oh and let's not forget. I had scoliosis surgery when I was 12 so I have a rod in my back from t1 to about l4 which I imagine contributed somehow to this too
Thank you for sharing ☺️ you can get better! Watch the video at www.hopefordystonia.com/welcome if you haven’t already to get an idea of the way forward
Oh my gosh! Your story is almost exactly my story. I'm 58 and I had scoliosis surgery when I was 12 also. I have a Harrington rod in my back. I believe mine is from t2 to l4! This is too much of a coincidence! I was diagnosed with dystonia when I was 24. I have told the doctors repeatedly I thought it was because of the surgery! One of them yelled at me and told me that I needed to calm down because I was shaking.
I just recently bought a red light panel and have been working on stimulation of the vagus nerve.
I have periods of whole body dystonia. It's very painful and stressful. I do suffer from severe spinal deformities which pull and push on my nerves as well as stretching and constricting muscles tendons and ligaments. Lately I have been having sleepless nights because my body is stiff. I'm not sure what to do.
Thank you for commenting, Debbie - please go to www.hopefordystonia.com and schedule a consultation 🙏
God is good. Be blessed for ever
Thank you for such an informative overview and especially for the HOPE you give to all in this video and also to me in our one-on-one sessions👏🏻🌸👏🏻
You are so welcome! It's a pleasure and an honour to work with you 🙏 Thank you for commenting and see you soon!
Do you have any videos of you when you were having dystonia. Actually i want to compare my condition with yours. I would be very grateful 🙏
Hello, my Dystonia was mostly not visible but you can see some of my visible symptoms in the article on that topic on hopefordystonia.com in the knowledge base section
@@hopefordystonia btw I have Generalized dystonia syndrome. It's very severe and painful. I'll be doing DBS surgery soon. I hope I'll have a successful one.
This is the 2nd time i see this video. The first time i came upon it, maybe a year ago, (i had just discovered i have dystonia from utube after googling "head turns left involuntarily" Lol!). I first watched videos of two different men, one in Sweden and one in the UK, who tell their own dystonia story, and with both of them i could recognise that they have what i have. This was a relief, to know others have this condition and that it has a name and maybe i'm not crazy(!)...and they both seemed like such lovely, sensitive, kind and intelligent people. When i came upon this vid of yours, i felt mistrust and impatience and quickly dismissed you as a possible scammer, because i saw no bodily signs on you that you had ever had this condition. Now, watching for the 2nd time, i guess i'll get a fresh take (i have only scanned and heard you say a few things so far).
@@kristinawalla glad to have you back!
Dystonia is emotional stress overload!!!
That’s one component only
Thank you thank you thank you. For sharing your amazing story. You've given me some hope 🙏🙏💃🏻💃🏻
You got this!
I understand the idea of healing from within, but how can you change the input that leads to maladaptive patterns if the input comes from occlusion? teeth are fixed so unless you change them from outside how are you going to change that input from within?
(I've also had bad experience with orthodontics that gradually worsened my condition)
Thank you for your excellent question, Marco! That’s where most people trip up and fail: they think that because the dysfunctional input comes from the teeth, they have to start by working on those. That approach has a very low success rate because it’s nearly impossible for an external person to figure out the occlusal configuration you need.
Instead, one must work to understand the patterns in the cranial nerves, work to normalize them through targeted stimulation, detox, trauma healing etc. and they will automatically begin to bring the jaw to a more functional position as the muscle tone evens out. You can *then* begin to work with a skilled and open minded dentist to register the ever improving occlusal configuration on a splint or composite.
So it starts with regulating the nervous system, not the teeth. Make sense?
@@hopefordystonia Ha perfettamente senso! non ho idea di come potrei trovare un dentista abbastanza illuminato e pazzo da aiutarmi in questa impresa però hahah, soprattutto in Italia
Vedrai che una volta che cominci a guarire, quella seconda parte col dentista diventa molto più secondaria. E poi trovare un dentista sufficientemente aperto non è difficile come sembra, persino in Italia 😊
How can I reach you?
@Lois Reach out on www.hopefordystonia.com using the chat function
Omg. That doctor who was supposed to be a fancy pain specialist on Park avenue should be reported for his unprofessional and cruel behavior.
well said!! 🙄😤😂
كل الشكر والتقدير اليك ايها البطل ! استمر ❤
شكرا جزيلا لك يا صديق ❤️
Hi i cry all the time as mine is all on the leftt side and i cant stop crying
After my stroke
I am sorry to hear ❤️ there is a way to get better! Did you check out the steps to recovery? www.hopefordystonia.com/welcome
Thank you for sharing!
how much time it took for u to recover?
In a few months I was able to do things that were unthinkable before 😊 It’s no indication of how long it will take for others though - it depends on a lot of factors
I have tremors also, does this help.
For sure!
What were your symptoms? My neck twists and jerks to the right.
The entire right side of my body was caught up in unrelenting tension. I had cervical symptoms as well. You can get better!
Mushrooms put my Dystonia into remission for 6 years. Some insane back to back trauma have brought it back this summer of 2024. I’m microdosing again but it isn’t helping so I am going to heroic dose once or twice in December and will report back.
Thanks for sharing! Guidance can make a big difference 🙏❤️
Hola! Una ortodoncia para mejorar la mordida puede ser negativa teniendo distonia? Y si se mejora la atm con algún tratamiento recomendado por el cirujano maxilofacial, pueden mejorar los síntomas? También hay gente q se recoloca la primera vértebra pero no se si teniendo tensiones en el cuello, puede ser algo que produzca un alivio temporal únicamente, que opina?
Hello, this is all very delicate and every little change can create trouble. If you’d like to chat more you can always book a time to speak at www.hopefordystonia.com
I am Focal hand dystonia patient. It is very Painful Problem 😢
You can get better! Watch the video at www.hopefordystonia.com/welcome to learn about the next steps in your recovery
I'm going to the website I've dealt with cervical dystonia for 18 years
You can get better! ❤️🩹
@@hopefordystonia I set up. A consultation for tomorrow I'm not sure if it went through as I didn't get a confirmation
Nothing came through on this end, please try again 🙏
@@serenebubbles3685 how did it go?
I live in US ! if I want to connect you , do I have to go to CA ? I see a video consultation is that sufficient to follow your guidance?
Hello Kaveri, yes, we would work online. No need to travel. Feel free to book a consultation ☺️
En España no es legal el uso de psicotripicos, Solo el aceite de cáñamo. Es imprescindible para mejorar Tomar esto?
No es imprescindible ☺️
Hi one of my family members suffers from severe dystonia. I am willing to explore more helpful intervention. How can i be in touch
Please visit www.hopefordystonia.com and book a consultation there 🙏
Hola! Que opinas de los tratamientos de Brainspoting ?
No es suficiente
Hello, where can I find out which mushrooms you are talking, please? Thanks.
Hello, you can learn more through the video at www.hopefordystonia.com/welcome
How do you use the mushroom 34:00
It takes a lot of preparation and coaching.
Hii bro am suffering same problem.. Give me perment cure treatment
Book a free consultation through the website!
Provide website
@lavanyabomma4093 did u get any help?? Plz let me know I am having this help.me plz😢
@@lavanyabomma4093. www.hopefordystonia.com
Do you do online consultation?
Yes! Visit www.hopefordystonia.com to book yours
Is there any way to receive professional help also in Germany? I suffer from dystonia since I am 22, so more than 25 years.
Hope for Dystonia is an online service so you can get help no matter where you are!
I have something like that yours. My jaw one day come out from the mandibula place and i get serious pains from that with the years because mine jaw was not where should be on the mandibula and still is me the same that condition. Mine teeths from one side missing and i cant close and mine mouth good and all that leading to pulling and in the neck spinning on the neck and smashing on the neck bones in it!!! That is many painful condition!!! Also in mine brain i feeling some difference between the two sides on power in it and with the time becoming more bad. Also i have falling on the neck at left side and spinning on right on the head. Other thing what i have is paralyzing on the two sides of mine face and head and like is and in mine brain, all that is from pulling on mine jaw, and she cant to go on place alone need doctors to put her on place. Yes but i going on doctors they cant to put it on place because not seeing mine case serious and saying that nothing not have me. Two doctors say that mine mandibula is not on place but nothing not do on the question. That amaze me why not wants to cure me? And i am been on many doctors and are laugh me all they call me psycho crazy and many things more and i just suffering many bad from one Jaw what is not on place. Bad in the case is that the doctors not helping me and should, that is them the job, and that they need to doing because they are there for that to helping on the people and not to getting theyr money only, right!!! Also those days mine neck condition become so bad that can and to kill me, still not knows what will happen with me from that. But i will not giving up because that is mine life and i need to save it and not to waiting just to kill me one jaw and i to taking all pains years without cure because not have one human who to wants to helping for that on other human to be cured on all ways what are possible, and cure for all have i am shure in that, just need to searching and to found it. On me need me just one jaw repairing someone to put me the jaw on place and if need to make operation to repair the mandibula. Also i know one doctor who can put jaws on place many easy but i cant to do it like him his name is Doctor Rahim and he is the most good chiropractor in the world. He can to put all bone on her place even to repair wrong form on the nose. :D Many good chiropractor is believe me!!! But i cant go to him because i not have money so much for that trip and cure from him need and for hotel money many money wants to go to him and to repair you. The things are many bad when you are really sick know what is you but no one not believing you and not wants to help you to cure yourself. E that is the bad in the case. But i will not giving up will searching ways to repair mine jaw before to am die. :D if someone can to help me will am happy if do it. :D And thanks dude for the video what you are make, i like what you saying you re good human!!!
Thank you for sharing this - you can get better!! 💪 Visit www.hopefordystonia.com/welcome and access the Hope for Dystonia Recovery Roadmap to get started 🙏
Hello my husband have general dystonia started July 2021 up to now I can'nt afford for long time medication can I ask you if you have foundation please help my husband I don't know where I get the money. Thank you
Hello! Have you guys booked your free consultation? We can perhaps come up with some ideas to help your husband on his journey
hi ...can cervical dystonia be treated via chiropractor ???
It can provide relief, but it won’t address the true causal factors
@@hopefordystonia k thnkuu
@@hopefordystonia but c5 c6 disc bulge is there lightly, so through chiro can disc comes to its original form??
@@jimmyjatinjim only for as long as your nervous system doesn't contract the muscles back into an asymmetrical pattern and pull your vertebrae out of alignment again. The solution is in the nervous system, not the vertebrae
@@hopefordystonia thnkuu..👍
What exercises do you know for people with hoarse oromandibular dystonia?
It’s about so, so much more than exercises. Check out the video at www.hopefordystonia.com/welcome to learn how to recover
I am 14 years old and have acute musician's focal dystonia and know it is a very complicated thing but from a logical, scientific, and objective perspective, since musician's focal dystonia, as a condition truly is not actually damage to the brain but a maladaptive rewiring of the brain and given the fact that the brain can always adapt and rewire itself through time as long as the brain has not suffered any type of damage cellularly or structurally, it seems that through consistent and deliberate retraining that shows progress in the recovery journey, the brain's neuroplasticity can eventually rewire the brain back to normal and overcome deeply ingrained changes/neuroplastic limits as dystonia does not actually cause any structural or cellular damage to the brain that prevents neuroplasticity from overcoming these challenges and given the fact that the brain is always technically able to continue rewiring itself. It can be extremely challenging and take a very long time to achieve a full 100% recovery with no dystonic symptoms and sensations from effective retraining but from an objective and scientific perspective, it seems certainly possible. What seems variable for each individual is the rate of recovery and the time it takes rather than the actual possibility of a full 100% recovery, which logically seems to be guaranteed with effective retraining and time considering neuroplasticity's amazing abilities to overcome deeply ingrained and even hard to reverse corrupted neural pathways and the fact that dystonia does not actually cause damage to the brain that prevents neuroplasticity from overcoming these challenges like a stroke or Alzheimer's would. So in conclusion, it seems that as long the retraining results in progress in the recovery process and the retraining is consistent, then disregarding the rate of recovery and time it takes, eventually, the brain will rewire back to normal. What differs for each individual for this challenging and often unpredictable journey is the rate and time it takes to achieve the full 100% recovery.
Sidenote: I used a method of piano technique called the Taubman approach and have seen truly significant and noticeable improvement. I started retraining a week ago and progress felt almost instantaneously! Never give up!!!!!!
Thanks for sharing ☺️ keep up the good work!
Am suffering from se problem pls convert in telugu
How to contact u man
Www.hopefordystonia.com
@@lavanyabomma4093Hi I'm also telugian and I have this disorder 😢
Is lions mane usefull.? I am having this but i cannot afford the preciblin mushrooms and its not legal here. Can u plz suggst if i can take this
Lion’s mane has been shown to help the nervous system
@@hopefordystonia can u give it a try???
It never helped me
Where can I get these mushrooms I need to start I been in a lot of pain due to dystonia
Hey there, it’s not about just taking mushrooms, it’s about teaching your brain a functional pattern! Reach out on www.hopefordystonia.com to learn more
Where is this video? Please someone help me
You can get it at www.hopefordystonia.com/welcome
So this is curable ??? RIGHT?IF it's so I got a new hope
www.hopefordystonia.com/post/can_dystonia_be_cured
You can get your life back!
In Korea? Did you see Dr Lee?
I have a whole video about that
What is the difference between dystonia and tourette syndrom??
Many differences but also a lot in common - helping one can help the other
I can’t seem to find video.
www.hopefordystonia.com/welcome
Omg I’m so sorry that doc treated you that way.!
Thank you for your solidarity 😊
How do I reach you?
Hello, you can send a message at www.hopefordystonia.com
what about for a toddler. I have a 3 year old drs wanted to give antipsychotics bc they suspected, but wasn't sure, but suspected he may have movements associated with dystonia . How do i help him if he does have it. they say its less likely to recover the younger it onsets bc the muscles or brain remembers and functions this way for way longer before treatment can be administered
Does he have the TOR1A gene (also known as DYT1)?
@@hopefordystonia I'm not sure. They haven't done any formal testing on him. They clinically diagnosed him based off of what they were seeing him do and what I was describing... We just got home from being in the hospital they suggested an outpatient EEG which we still have to schedule now that we are home the movements are still persistent and I'm really starting to believe he does have some type of movement disorder and I don't know what caused it.. or which direction to take this because he is also diagnosed with ASD level one... So he's picky about what he eats he will take a chewable supplement though.. but him consciously doing things to change his neuro pathways doesn't seem like an option at this age so I don't know what to do for him
Feel free to shoot me a message on the site
I believe an antipsychotic caused mine. I am in so much pain and was basically laughed at during my admission to Beaumont Dearborn last week. They tried to overdose me and kill me. I am not kidding you. They had me in a trauma room and I was choking because my neck was pulling my head so far to the left they had to suction sexreations but kept blowing my veins trying to get an IV 11 times. So then they begin assuming!!! I was a drug addict. My arms were perfectly clear but skinny because I was told early in the year I had Graves’ disease. I have lost all my healthy body weight since this began. I am 5’6” 45 years old and weigh 102 lbs now. At the same time I was diagnosed with Graves I had an ER vidit fir horrible neck pain and my head moving and being stuck. I was told I had spasmodic Torricollis. This happened in April-May. I’m now in full body spasms affecting my head, face, jaw, neck, chest, abdomen, pelvis, legs and feet. And don’t forget my arms. My left shoulder pulls inward. I’m getting caught in a perpetual spasm on my left side. I cannot sleep. I cannot get help. My admission was pointless because my MRI (head, C-spine, and T-spine) were “normal” other than the fact that my neck was completely bent in the photos and they just told me you have dystonia and sent me home with a muscle relaxer which is not helping me. The only med I think helping me is klonopin. And they’re threatening everyone they will take this away. I’ve been on it for 17 years and I need it. I was diagnosed with trigeminal neuralgia in 2011 and lost two good teeth to it. I had a recent fall and smacked my chin on the bathroom sink and broke 3 teeth. It’s gotten much worse since then but I did t have a brain injury. But when I go back and look I started having muscle jerking back in the early 2000s. Odd neck jerking with the leg on the opposite side of my neck jerk woild jerk immediate after my neck. Almost sequentially. I didn’t know what it was and thought it was maybe the beginning of Parkinson’s. That’s what I fear I have now. I am speaking against that. I pray there is something, someone that can help me. Thank you for sharing this. I’m going to actively try to do this. I’m always co fused what to do with my jaw bone. I’m now biting my tongue with my left teeth and sound funny talking. It’s as if my tongue has moved. Or has it never my jaw. My face looks misaligned not as if my jaw is pushing toward my left shoulder. I cannot sleep. This comes in so strong when at rest. Anyone have any tips? Anyone try charlottes web? I’m so afraid of mushrooms and psychedelics.
@@hopefordystoniahelp me. I feel like I’m dying. It’s taking away all my muscle control. Choking me. Twisting my chest to where it makes my breasts look out of place on my body. It’s twisting my abdomen and moving my insides. Same with pelvis and is affecting my urination and BMs. Feels like it moves a muscle to cover those areas and I urinate sideways and cannot pass a BM. It involves my legs and arms, hands and feet go tingly and numb and feel like the muscles are being ripped away from my palm and souls. My eyes are being HIGHLY AFFECTED. I can’t see and reading is so hard I am having to listen to audiobooks. I’m biting my tongue with my left teeth. I was told in 2011 I had trigeminal Neuralgia due to secere left sided face pain not before I lost my back two (healthy) molars on that side because they hurt so bad. I don’t think it is trigeminal neuralgia at all. You’re video speaks to my stress in my life (possible divorce). I was doabised with Graves’ disease earlier this year and am down to 100 lbs from150+. A normal weight for my height and age as a 45 year old woman. I fear I have developed Parkinson’s. I cannot see a neurologist until end of December. I need help. But I have CPTSD. I have had two suicide attempts this year, one for which I was not awake (due to the side effects of a psych med I was put on that I did not need!). I injured my face and broke three teeth from this fall on September 27. I had all symptoms before this fall tho. Just not as much as now. They started 27 days after my release from the hospital. About 43 dss as us after the injury it got worse. I have a vaccine injury from 2007 and was diagnosed with Systemic Lupus and fibromyalgia in 08. I do t know where to turn and as I said I fear the use of psychedelics. But I’m willing to try anything at this point. I’m a wife and mother of 3. I can’t take this pain and I never sleep. I feel so alone. I have trouble breathing too. From my neck and my chest feels constricted. So badly one night my husband was driving me to the ER because I couldn’t breathe and thought I was having a heart attack. I made him stop at the fire station because it got so bad I couldn’t get a breath in my chest felt like an elephant was sitting on it. I finally got myself calm with his help and breathed thru it. The fireman did a EKG that was normal other than a fast heart rate. Idk if any of this makes sense to you. I really need help. I’m losing hope from my lack of sleep and the constant pain.
Questions!:
1) My 8yo has CP from HIE at birth. Breech baby who aspirated, didn't breathe for 18 minutes. Cooling bed for first 3 days worked wonders. Walking talking, just fine motor and speech is hard. His hands are dystonic while his legs are more spastic. Do you think you're more methods could help his dystonia?
Also we just found QNRT therapy. I am wondering if we resolve some of the first trauma if some of his nervous system protection will lessen. It's worth every effort.
Hi Jessica, thank you for your comment. Feel free to book a free consultation on hopefordystonia.com so we can chat more.
Have you ever been checked out for silent sinus syndrome?
Thank you for your comment. It did not come up in any CT scans and a lot of the asymmetries I have dealt with are verifiably genetic, induced by physical trauma etc. and respond well to neuromuscular repatterning and the other steps I outline
I was prescribed long term benzo and antidepressants for 13 years by these evil doctors. I left them cold turkey and since then i vr dystonia and left side body is tight pulls n my spine is deformed . 2.5 years am bedridden lost my life my career. Now no oone here in india understands. I ve a six year old son. Now i have no support no money. Starving as i cant work nor does govt help.i would love to have the mushrooms n help but i dont knoe if i can afford. Am giving up😢
Sorry to hear about these struggles, please don’t give up! Visit www.hopefordystonia.com/dystoniarecovery to learn more about how you can get better!
My right side is so underused to the point that my smile is cockied and eye is closed more. My whole right side feels “dead” . My head is pulling to the right
Thank you for the video. It gives me hope. I’m early on in my journey with cervical dystonia
Thanks for your comments, Thomas! You can get better ❤️🩹 watch the video at www.hopefordystonia.com/welcome to get a better understanding of the way forward and let us know what you think!
Grace
@@thomaschambers5711how’s your journey going?
👍👍👍👍
🙏❤️
I was called a liar.
Sorry this happened to you 🙏❤️
Ayurvedic treatment can do lot to beat this Ayurveda is ancient Indian method of treatment.
Lots of things in Ayurveda can be helpful, especially the focus on energy flow!
Mushrooms...where¿
Check your local laws as a first step
Shameful Doctor. He is not a Doc😢 so sorry you endured his disgusting behaviour. He must fired
Thank you for your solidarity 😊🙏❤️
God is good. Be blessed for ever