I’ve been diagnosed with dystonia when I was 7 years old. It has effected my life in every single way. It feels nice to know that there are people who know the type of struggle I’m facing. I had a major surgery at 12 years old which helped a lot but it hasn’t fully cured me. Thank you for this amazing video
Ive had Dystonia since I was 5year old, although I was diagnosed essential tremor until 2 years ago. Its totally ruined my life tbh. With shaking body arms, legs. Also struggled with confidence, depression and anxiety. Now im in my 60s, neck tightens, pain in shoulders back, cramping legs and toes. My throat tightenes and some days i struggle to swallow. It affects my eyes. I Struggle with being out of breath. I do have jerks and I do call out sometimes. The only plus is sometimes people tell me that I look really young, Im ready for knackers yard tbh
I've suffered with dystonia of both feet, toes and middle finger on my left hand constantly for 10 years. I've seen neurological specialist in NY, GA, NC and OH and no one had a clue. I literally diagnosed myself from viewing YT videos and Google this month. It's sad to realize this condition is not curable but it's a relief to finally put a name to it. I wish to God it would stop on it's own because it's extremely uncomfortable. Life is something else.
That is rough. Sometimes chiropractic neurology can provide some comfort or palliative care for conditions like this even though they are not curable. Good luck and thank you for watching our channel.
I’ve had this for about fifteen years after being prescribed Effexor. Of course, no doctor diagnosed it. I just stumbled on the topic in other reading and thought, “That sounds a lot like what I do”. It’s amazing that Google and UA-cam can outperform doctors with a dozen years of medical training. You might want to consider the Feldenkrais Method or Hannah Somatic Education. Both help the brain to learn how to move better and reduce spasticity. Both have helped me a lot.
@NubianJourneys I'm sorry to hear of your pain. I am grateful to learn others have individual fingers that do it. My pinkie on my left gets so tender it feels like nerve damage. I've so much to learn. It can't be adequately researched to much thanks
Iam glad i don't have dystonia i have read about it for the people who has dystonia i am praying for y'all god bless y'all i hope one day y'all will be cured from this
I feel like I'm being judged for someone on drugs. Mine is worse now at 65 but feel I've been undiagnosed for years. Always weird in social settings & on the job or anything. I drank for years to be able to socialize. But now on some days are so awful to even try to walk in a store. Praying for healing 🙏 God bless everyone. I'm at least relieved to know what is wrong. Do not have surgery before seeing a neurological Dr. I also have problems with lock-jaw. My sister has this to. My mom had the shaking of the head. My arms are numb a lot & my legs to not as bad but depends on what day it is. Arthritis too.
This sounds like more complex than typical hemorrhoids. When there are muscle contractures in other body parts that include both skeletal and smooth muscle, and movement disorder type symptoms we need to look at other drivers of the condition, such as mineral balance, chronic heavy metal burden, toxic chemical exposure, genetic dystonias, central nervous injury, and many others. This is a challenge that is more than just the everyday-thank you for your story and good luck!
I nave Dystonia and my whole body moved and even my vocals chords, made me studder, like I used to when I was a child, I'm not shaking like I use to do in fact , you may think I don't have Dystonia ,but I've learned how to hide it ,I still have shakes ,just don't like going out when it decides to remind me it's still with me
Thanks for your story. How did you improve the condition? Diet, brain exercises, rest, alternative methods? Was it caused by medications or commercial toxins? Thank you.
@karlaolsonmendell8459 I'm glad you are getting things in order! It took 20 years of being called a liar, exagerator, & a hypochondriac before being diagnosed with generalized dystonia. What got the V.A. to give me genetic testing & a diagnosis? A gadzillion pics documenting "spasms" in my entire body & when a new neurologist asked me if anything helped when I had "dystonic storms." I said I shouldn't tell you, but if I take 2 shots of vodka, it calms my intensely painful spasms like "oil on water. " I still can't finish a single beer on a hot day while bar-b-que'ing, but myoclonic dystonia responds to a specific 2 ounces of alcohol. LOL, more than that, I get a hangover WITH dystonic posturing! Not fun. All that to say, tell your medical team EVERYTHING no matter how trivial or odd. It just might be a clue! Take care!
I'm learning the more I learn, the more I actually knew. I just have the proper terms now . More appointments are upcoming 2 today, adding 3 more . I'm grateful to be heard and I'm grateful to listen
I wish this video also talked about neuro plasticity and how it can be a game changer in dystonia recovery. This is old school info. Neuro plasticity is real and transforming ppl with dystonia to living a symptom free life
My son is 18 yrs old now, we noticed spasms when he started learning to eat at 2 yrs old… he was diagnosed with dystonia, but I’m not 100% sure it’s even this, because I haven’t found anyone that has his same symptoms. He can write or drinks from a cup, his whole upper body jerks and he says it’s now affecting his vocal cords…it’s more on his upper torso, when he spasms it affects his legs too, I don’t think his legs spasms, but since his torso is jerking and affects his legs
This is wonderful all what the doctor said and explained is what is happening to me I’m recommending this to all my wonderful family, and close friends so they get it , thank you I feel relived to know I haven’t gone mad . Fantastic insight and explanations for me , England
Metronidazole another name for this medication is Flagyl given for infections cause Torsion Dystonia . This was not in the medical books 40 years ago when my son had an infection in his foot through standing on a nail . I read all about this condition then and everything pointed to the medication he was given in hospital. It is now in the medical books ,it's not always gene related as my son had a test a few years ago and the results where negative. I knew from the beginning it was the medication that caused it. It's a long story ,so will stop here .
My son has been having these events these events after a GI flare It’s when he is in the hosptial and the first few times it only loaded it few minutes but is now 5-12 hrs. We are scared but the hospital doesn’t seem overly concerned. They just give him Ativan until it stops
Please check out the book neurobehavioral disorders of childhood by Melillo and Leisman-there are GI problems that trigger movement problems called PANDAS and PANS. Please tell us what you learn and let us help.
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 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!
Truly brilliant summary! Yes. thanks for adding the Taubman approach for our viewers too. I would add that genetic tendencies are known, and I believe supplements can compensate for most of these. I would also add that neurotoxicity is a rising problem in dystonias and autism. I would test for mold, heavy metals, infections, parasites, insulin resistance, aluminum, heavy metals, and look at pesticides, solvents, fire retardants, GMOs and fluoride.
@@TheHumanCondition I totally agree! In fact, lots of neurotoxins are small, but there in many common everyday foods such as aluminum 3+ in cakes and muffins. Now that I think about it, genetics truly are a big factor! For example, I found out that my grandpa and great-grandmother both have dystonic tremors as opposed to my condition which is involuntary curling.
my big toe twitches and rubs constantly until severe pain as well as causing blisters where i have to tape toes together to control it. stress seems to bring on severe symptoms until i can barely walk. condition started after falling 30 feet and fracturing L1 L2 and L4 no surgery was done to fix spine and i recovered almost back to normal but the toe pain is severe.
While its not reasonable to diagnose or treat here, lets explore possibilities. Injury to autonomic nerves in the spinal cord or peripheral nerves can lead to a blistering, pain or poor wound healing-I would ask about second opinions from functional neurology and medicine docs locally. Let us know how it goes.
My son was diagnosed with Generalised Primary Dystonia at 6 years old. He is now 19. It never progressed and he had never and has never had any prolonged spasms. I always doubted the diagnosis, but he was diagnosed by 3 Paediatric Neurologists. He did try a course of dopamine but was deemed non dopa-responsive. His movements are more 'wobbly', lack of 'centre/core', drooling, I do wish I had more answers.
While I cannot diagnose or treat here, if it was me I would 1. check hair heavy metals and urine toxic manmade molecules due to the sensitivity of the basal ganglia to these. The BG drives movement disorders. 2. I would check the cerebellum for eye movement and balance deficits because the baseline cerebellum resistance to gravity posturally sets the tone for the basal ganglia. So much so that some rehab has to start supine non weight bearing it is profound. 3. consider neurochemistry testing of SNP, Yasko and Walsh for neurotransmitter metabolic problems that fit this scenario. some are genetic and some are organic acids in urine. 4. look at mold and autoimmunity 5. look at insulin resistance and lectin and salicylate, and oxalate intolerance and sometimes Kryptopyroluria urine testing. I know its a lot, but this is the real deal. Let us know what happens.
@@TheHumanCondition Thank you so so much. Since listening to your video I pulled out all his medical records from when he was 5/6 years old. He had a clear MRI He did a L-dopa trial with no effect Genetic test TFT46 XY Mitochondrial DNA Analysis Plasma Amino Acids CK 427 GUEG LFT normal Audiology normal Normal U&E's Liver function normal Urine organic acids Blood lactate and kayotype Renal function normal CRP I am going to take your notes to a neurologist.
I have cranial cervical dystonia I’ve had it since I was 8 I have a tilted head and I have a twitch in my neck I also blink non stop when it first came out I was biting down on my jaw like snapping my teeth and yanking my arms it’s so exhausting I wish there was a cure my neck constantly hurts at first I thought I had Tourette’s
Interesting, I wish you well. There are some excellent chiropractic neurologists who might be able to make a difference as well as the upper cervical specific chiropractic methods such as Atlas Orthogonal, NUCCA, Blair upper Cervical, and several other gentle and specific analytical methods that sometimes help. Tell us what happens.
I have cervical and vocal cord dystonia. I don't respond well to benzos and gaba agonists like baclofen, and i've also tried a levodopa trial. Artane isn't available in my country. Breathing is hard and I can't sleep even with a tracheostomy. I use ventilator when it gets bad. Do you think I'm a good candidate for Deep Brain Stimulation? or are the chances low that it will help me?
I would see a functional chiropractic neurologist first, and consider QEEG and lab testing of metabolism too. There are a lot of pesticides and herbicides and toxins that drive movement disorders and no one wants to talk about it. There are many things to try out there-neurofeedback, tDCS, TMS, PEMF, detoxing, and much more. Let us know what happens.
@@TheHumanCondition I'll try detoxing first. I respond really well to benadryl so my doctor put me on it twice a day. I was already taking magnesium and I find that it helps with constipation. I'll try the other things you mentioned before considering DBS. Thanks.
Great work Dr . I have been diagnosed with cervical dystonia for two years and I have got injected with botox Botulinum Toxin type A for six times. Every three month, I receive botox injection in my neck as a result I feel a better relief, but after the effect of the botox ends, my condition gets worse and I get muscle spasms and tremor. I want to know the best treatment for Cervical focal dysyonia .
My bias is toward the chiropractic neurology discipline, and while we cannot make drug claims, we see good supportive care results for many types of dystonia when the principles of functional plasticity are applied. I would find a local DC who is board certified in neurology on ACNB.org (which is undergoing repairs currently but you can email the executivedirector@acnb.org. What to expect? a detailed history, neurological examination, appropriate lab testing and imaging, and a treatment plan that is designed to activate the correct specific brain areas while at the same time not fatiguing those patches of cells. Expect diet changes too for balancing brain chemistry. This is tough to do without training. Keep us informed on your Health Journey.
I need to find a good doctor to help me. I had a car accident back in 2013 had to have 7 staples in my head. But I also have a bad past full of trauma. I will sporadically have spasms where I turn my head from side to side. And if i flip up my should and turn my head to the right i can stop it. Or that's just how it ends. I feel the build up like u describe and after it Happens theres a sort of release. I try to fight it and I tense up and it hurts. My neck gets so sore and so stiff. I notice tho when i get cold it makes them happen more frequently. But I also thought I just had Tourette's syndrome. Because sometimes I make noises. Like I'll kinda make like a meow sound or howl. Before I used to just have like a random loud hiccup that sounded a bit pterodactyl like. I still do that every once in awhile. Now it's more if the abrupt meow. But Also more frequent when I'm cold or stressed. Its rather embarrassing. Thank god I work with animals and understanding people. And I'm a introvert 😅 can you point me in the right direction? My neck just hurts so bad sometimes. Kinda like when you have a orgasm your muscles tense up 🤷♀️ cept pleasure you get pain with this spasm. Idk how to describe it. But your the only person Iv seen describe it so accurately. Any tips and advice is much appreciated. Thank you
This is not individual health advice-just commentary for discussion on concepts-here we go: When features of buildup and tics or spasms occur with vocal explosive utterances we look carefully at the subthalamic nucleus as part of a struggling indirect pathway of the basal ganglia. This is the part that slows down brain circuits and keeps us from having outbursts of movement or vocalizations, and it is often a part of the Tourette syndrome. So sometimes functional work on the indirect pathway with a functional neurologist can help in small or large ways. Further, when moving body parts quiets a spasm or tic movement there can be a potential for a peripheral muscle injury that perpetuates the cycle, not just a brain -based problem. If so, methods that reset the sensitivity of muscle spindle cells inside chronically strained muscles such as counterstrain, PNF stretching and other "muscle energy techniques" which are real recognized neurological phenomena-not mystical energy medicine-may help reduce the gain experienced by the central nervous system nd recycled back to the muscle as a tic or spasm loop. We will add a resource section for you to follow to find help around the world, and don't forget that basal ganglia parts of the brain are really sensitive to heavy metal toxicity, so consider examining heavy metal chronic exposure, which does not show up on a blood test for heavy metals. Keep us informed.
Dr. Pierce's clinics are in Newport Beach, California, Las Vegas, Nevada and Denver, Colorado. You can visit the clinic website ifixspines.com/ where you will find phone numbers for either of those clinics in the top right corner on the main page. You can schedule an appointment by calling one of those numbers (depending on the location that works best for you). If none of these locations would work, here are some more resources and other options for you to find neurofeedback practitioners - www.BCIA.org; for chiropractic neurologists - www.ACNB.org; and for QEEG analysts - qeegcertificationboard.org/. Finding functional medicine doctors can be challenging due to the varied levels of expertise in biochemistry you will find. Some do food and diets really well, and others use complex lab tests to refine and target nutritional supplement regimens to support very specific biochemical pathways and even gene mutations. Sometimes we are persecuted for not using the standard diagnostic and treatment coding system to solve practical problems and I think those critiques are thin and tone-deaf. Interview your candidates thoroughly and see if they have a reputation. We plan to offer more educational and fun interactions, courses and classes for those of you who need more personal attention next year in 2022-but we will not be diagnosing or treating patients-just explaining every element of wellness and the biology of Your Health Journey. Stay tuned, and let us know if you want more direct access to education and we will move faster. Teaser item for 2022: We are working on online general education projects for next year for those who are far away from us. Let us know if you are interested. Hope this helps and thank you for watching our channel! *Currently the ACNB website is under construction and should be back online soon. Until then, you may email executivedirector@ACNB.org for a personal response for locating qualified doctors.
Can continuous biting of the tongue and cheek be art of dystonia? I was diagnosed 12 yrs ago and my head sits on my left shoulder and is tipped down on my left breast.
Such biting of tongue could be a dystonia or it could also be part of a larger tardive dyskinesia if there is a psychiatric medication history-this often involves lip chewing and limb and head movements. Let us know what happens.
My son, who is 2 years and 8 months old, has had spasmodic movements for over a year. I have been trying to research and find the name of this to try to help him but one of the peds told me, some kids may have this. It looks like he clenches his fists and sometimes he even open his mouth simultaneously for several seconds. Similar to when he is cold but much more intense. Well, he would do that for excitement, for anger, for anticipation to things, for any reason several times a day. Some days less than others. It was extremely odd and worrisome my parents and myself to see him doing that without any explanation. Well… due to some developmental delays and GI issues I started dairy and gluten free diet with him. He’d had issues with dairy before so I started to cut dairy first, after one month of being diary free, the tremors or movements continued. Then I slowly started to eliminate gluten, when he cut gluten off completely, the movements disappeared. I noticed the first day he didn’t do it and I thought it was a coincidence, then I started observing to try to see if he would do it, nothing. One day he ate regular crackers. That day he had the movements twice. I started researching about this connection and found that sometimes gluten affect cerebellum (in some people). This video was very helpful to me and I hope what I just said is helpful to anyone who might need it.
Look for a physical therapist or massage therapist or chiropractor who has experience with movement disorders. Also talk to your doctor about balancing electrolytes and checking kidney function to be safe. Sometimes electrolyte (salts) imbalance or caffeine or even dehydration can trigger cramps too. It may be dystonia or cramps or something else. If you cannot get answers get a neurological exam. Tell us what you learn on Your Health Journey so we can all learn.
Sure, but not exclusively. Cause is an interesting term. Let's unpack this. Dystonia is involuntary muscle contracture or tremor in a region of the body triggered by the brain-specifically the extrapyramidal system which includes the basal ganglia and the cerebellum circuits. It is often progressive and gets worse. there are many other muscle contracture diseases that are not called dystonia, too. What causes the basal ganglia to misfire? Well, genes, trauma, heavy metals and other poisons, infections, and PTSD or emotional trauma are all possible triggers. Thanks.
I'm having this sort of disease Doctor suggested me physiotherapy Involuntary folding of fingers in legs and hands, head tilting towards any side for nearly 10 seconds mainly while running is any sort of dystonia sir?
It does sound like dystonia, although I cannot diagnose with this info or on this forum. You know my bias is toward chiropractic neurology for this kind of symptom-I am a big fan of physical therapists, acupuncturists and osteopaths too when they study functional neurology. Thanks for this-find a clinician who gets into this and tell us what you learn on Your Health Journey.
Sometimes there are epileptic transient waves in these cases driving some symptoms. If nothing works, I consider EEG/QEEG in these cases to look for transient irregular brain waves-over 20 minutes of data collection with mixed eyes closed and open have a bout 50% chance of catching these.
It can. In fact Dr. Amy Yasko discusses the concept that heavy metals drive mold metabolism as a fuel for mold, and mold can accumulate heavy metals. Consider the GPLmycotox lab test for mold toxins in urine from great plains lab in Kansas city, USA
Good evening: I have an office work which requires me to me sitting and looking down reviewing documents. When I look up I feel ny neck starts shaking mainly on the left side. I tend to crack my neck a lot and feel it’s easier to do it on one side than the other. The discomfort I feel on my neck goes down my left arm. When I feel my body tense I feel it from my cervical, down to my throat to my stomach. When I try to exercise (sit-ups for example) my body shakes and I’ve been going to the chiropractor and massage therapist and see no results. It’s been a year since I noticed this problem and don’t know what to do. Any suggestions doctor? I do thank you in advance for your reply.
Great description-very thorough. I would meet with my chiropractor and discuss what can be done next, from changing techniques, to getting a neurological exam, to flexion-extension and side bending x-rays to a second opinion from another doctor of chiropractic that your chiropractor trusts. Even nutritional aspects such as magnesium deficit could contribute to symptoms. Let us know what happens.
@@TheHumanCondition I DO THANK YOU VERY MUCH FOR TAKING THE TIME TO READ MY COMMENT AND REPLYING. CURRENTLY WORKING IN GETTING A SECOND OPINION. THANKS AGAIN.
Could dystonia cause involuntary movements of the eyes like a pendulum? Especially with eternally tense painful neck muscles with limited movement. Balance issues with tinnitus, brain fog and occasional vertigo. Brain MRI looks good and the doctors have no idea what is causing the eye movements. Any advice please.
The short answer is yes dystonia might result in eye movements that are involuntary. Because the visual system and the spinal system are so integrated especially in the cerebellum and brainstem, the MLF or medial longitudinal fasciculus carries signals to the eyes that strive to compensate for the head movements or tremors sometimes. The nervous system is trying to be helpful and resolve the visual errors produced by the head movements. These eye movements are often compensatory for the dystonic head movements, but in cases of brain injury + dystonia they may fail to compensate. Remember that dystonia is so often triggered by brain impacts due to certain DYT genes. Evolutionary biology always tries to compensate because we are evolved hunters from the stone age, and we cannot hunt food animals if our head and eyes cannot coordinate to track running prey as we chase them down on foot. I also suspect that basal ganglia based dystonias will grow as Americans fail to identify chronic slow heavy metal exposure and aluminum exposure. Great question, thanks.
Certainly sounds a lot like a nystagmus but then your doctors would have easily been able to to identify a nystagmus and which type as they're very common and very frequently seen with different types of vertigo.
Can dystonia post stroke be treated? My dad has it bad in his right arm. Has no clear control over the movement. I noticed in his voice as well, it cause his voice to catch and spasm sometimes.
Hi doc, need your advice.. my brother has been diagnosed with generalised dystonia since 2018... medication and botox didn't help.. should we plan for deep brain stimulation?
I also feel like dystonia, my right side of my body is spasmed (neck is tilted to the left, arms 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 and move suddenly if my level blood pressure and blood calcium are low so this happens many times a day. Contrary, i have a little system if my level blood pressure and blood calcium is normal. I was diagnosed with fahr syndrome.Do I have dystonia, doctor?
I dare not diagnose from here, so I will say that Fahr syndrome is in the category of basal ganglia based movement disorders, as is dystonia. This is a semantic issue and all fit in the category of basal ganglia movement disorders-some are genetic and some are more metal poisoning or other toxins, some are dental material reactions, and some are traumatic or even emotional at their root, and many other causes. Good question.
I’ve had dystonia since 2019. Both hands, feet, legs, neck & both sides of my diaphragm. It’s a nasty, nasty thing. When I get spasms in my hands, I can’t hold onto the steering wheel if I’m driving. When I get them in my diaphragm, it makes it hard & painful to breathe. I also have MS & a severe degenerative spine disease, but dystonia spasticity is the worst fucking pain I have ever felt in my entire (60y) life. Love 💕 to all who are living with it.
@@TheHumanCondition Not sure who u r, but in my 30 years of dealing with MS, Dystonia, & chronic pain, that is the stupidest advice I’ve ever gotten. I see the head of Neurology at one of the best hospitals Boston. But yeah, I’m sure you’re right.
There is a large alternative neurology field that goes back 100 years, I was surprised to learn that not all wisdom is found in orthodox medicine, and there is a lot of problematic explanations in orthodox neurology. Good luck let us know what happens. My training was part of the American chiropractic Association council on Neurology, the ACNB.org does the certification.
I got cevical dystonia that started 48 hours after my first vacine. It is a year later now and it is getting worse have been treating with cyropratic and massage for a year or so and it seems to not be helping.
I've been diagnosed with dystonia or should I say the Neurologist said impression. The ECG muscle test needles stuck into my back seemed to confirm this. I can't stand without wobbling and gait is affected. Sitting is good cycling good and sleeping ok. My bloods all normal although b12: abnormal in results. It can affect mental wellbeing. I'm thinking try Botox injections. The Neurologist said try tritrihexyphenidyl that will take the pain away but not sure forever. All my strength is ok core strong but abdominal muscles could be better
OK I would try the nutrition work of Walsh Research Institute, and Amy Yasko SNPS and B vitamins. I would also try Paul Saladino's Carnivore Code book. I would also see a chiropractic neurologist to assess the limbic brain and cerebellum, among other structures that stabilize posture. Also consider mast cell activation syndrome as a part of dystonia in some cases, and don't forget to measure hair heavy metals and synthetic chemicals in urine from Great Plains lab in Kansas. Let me know what happens.
@@TheHumanCondition I'm currently taking b12 vitamin daily as that should up in a blood test as abnormal. I'm thinking try multivitamins after this. Dizapam the Medication I'm on at the minute isn't working. Baclofen was mentioned but the Neurologist said try tritrihexyphenidyl and that will get rid of the lower lat muscle tightness which is the only pain I'm getting. I get into a swimming pool once a week feels great. My brain scan was normal and lower back scan normal.
Humanconditionlab.com opens soon and locals.com will have us too. ACNB.org shows many countries with functional neurologists, but India is poorly represented by our group. We hope to offer more from Dubai to India in future! Thank you so much!
I'm suffering from focal dystonia since 5 years it feels extremely uncomfortable I'm from India and there is no proper treatment in India. Does deep brain stimulation help and how safe is it?
I follow the path of Hippocrates which says primum non nocere-first do no harm, which implies that one should move from least invasive to more invasive. That means to look for gentle methods first before strong methods. DBS is a strong method and there are others less intense one could try first: tDCS, LENS, infraslow fluctuation or s-LORETA or multivariate coherence (Coben) neurofeedback, chiropractic neurology, basal ganglia detoxification and heavy metal hair testing, glyphosate testing, gluten antibody testing, elimination diets, SNP testing, mold testing and detox, and more. Good question!
Most people start with their regular GP on their health insurance plan, and the GP can refer to the specialty neurologist as required. Once the patient has been screened, they get to a decision point to try orthodox medicine, or to try alternative medicine, or a combination. No one knows the ultimate answer and there is risk to either decision. Good Luck! Tell us what happens.
@@TheHumanCondition What is a GP? I’m sorry it’s just kind of weird to talk about to people, especially my parents, I don’t wanna be deemed disabled or something, or people to look at me differently, or have a problem working as well, I’m only 20.
Oh sorry-A GP in the US is a general practitioner-usually an MD who is the portal of entry doctor for most insurance plans. Often a skilled nurse can triage people into diagnostic categories and get the process of medical diagnosis started. Alternative medicine can help most frequently when the condition is chronic and especially after orthodox medicine completes its diagnostic work. Only then can they discuss all treatment options and admit that outside options exist. No treatment is also always an option, and all choices have consequences that are unforeseen.
@@TheHumanCondition hello sir. doctor where you from? are you located here in los angeles california if so i would like to get appointment with you in the future. i do have a lot of health issues especially this past month im having cervical dystonia symptoms. im not into my doctor they’re not that much care and the meds they always prescribe are not helping at all. thank you
I read up a lot about the different forms of magnesium and Dystonia. The concensus is Magnesium Glycinate is the best form of Magnesium to take. I take one Qunol 450mg capsule in the a.m. and p.m.
Not sure, I would start with electrolyte balance with sodium, potassium, chloride, magnesium etc. and then check reflexes. This would help a lot. If there is white matter damage MRI should find it in the brain and spinal cord. Let me know what happens.
I see white matter changes in the brain or spinal cord from autoimmunity to foods, toxins, heavy metals, or insulin resistance driven oxidative damage. There is a lot of hope I have seen many people reverse this type of problem.
Hi doctor, my mother 55 years old, suffered by head dystonia over past 30 days..now heads shaking frequently and couldn't able to walk and getting pain in neck also..doctor May I know is it cure by treatment.. Can u give any suggestions on that.Thanking you
I am biased toward chiropractic neurology, but find any doctor and get a diagnosis to start. You can consider neurofeedback practitioners from BCIA.org, and chiropractic neurologists from ACNB.org, and QEEG analysts from qeegcertificationboard.org/
Science is so far behind on dystonia. I suffered for years, only ever getting worse with treatment. Finally when I started considering giving up I tried ayahuasca just to see. It worked! With psychedelics I was able to interact with the sensations that cause the dystonic reactions... without reacting. I was able to ask myself why I tremble and shake and realized it was fear of pain. Realizing I wasn’t afraid of the pain at the moment, I started working to change my relationship with the pain. It’s taking a lot of effort and sure isn’t pretty but my brain is now fully aware that it is the source of my troubles. The tremors have gone down tremendously and when they do start, they don’t run for very long before my brain goes “oops 😅” and stops the contractions. And it learns what movement set off the tremor and I feel my brain let go of that bad pathway. Before trying ayahuasca I was turning into the curled up ball that can’t breathe or eat. I used to throw up from chocking on my own throat. Now I’m in the gym several times a week and out hiking in the woods, happily balancing on fallen trees surrounded by thorns. It feels like it’s giving me my whole life back. Though I don’t know that I’ll ever feel like I used to, I have such better days now than before the accident. I’m stronger too! Setting new personal records on my squat and deadlift even though my legs are very, very hard to use. About 5 months ago I had a thought that if I could rebuild my neck nerve by nerve I will recover. In time, that’s what’s happening!
Imam ovo 6 godina (sada imam 52)Glava mi ide na levoj strani, moze i na desnoj ali pravo nikako!!!!!Nemogu glavu da drzim pravo odma sklizne u levo. Radjen mi je botox1-2godine, vise ne zelim...nije puno pomoglo Pomaze mi malo Biokubernetik i igranje, plesanje...pokreti celog tela. Uzomam D3 K2, zink,B12, C vitamin
I need to find a good doctor to help me. I had a car accident back in 2013 had to have 7 staples in my head. But I also have a bad past full of trauma. I will sporadically have spasms where I turn my head from side to side. And if i flip up my should and turn my head to the right i can stop it. Or that's just how it ends. I feel the build up like u describe and after it Happens theres a sort of release. I try to fight it and I tense up and it hurts. My neck gets so sore and so stiff. I notice tho when i get cold it makes them happen more frequently. But I also thought I just had Tourette's syndrome. Because sometimes I make noises. Like I'll kinda make like a meow sound or howl. Before I used to just have like a random loud hiccup that sounded a bit pterodactyl like. I still do that every once in awhile. Now it's more if the abrupt meow. But Also more frequent when I'm cold or stressed. Its rather embarrassing. Thank god I work with animals and understanding people. And I'm a introvert 😅 can you point me in the right direction? My neck just hurts so bad sometimes. Kinda like when you have a orgasm your muscles tense up 🤷♀️ cept pleasure you get pain with this spasm. Idk how to describe it. But your the only person Iv seen describe it so accurately. Any tips and advice is much appreciated. Thank you
This is not individual health advice-just commentary for discussion on concepts-here we go: When features of buildup and tics or spasms occur with vocal explosive utterances we look carefully at the subthalamic nucleus as part of a struggling indirect pathway of the basal ganglia. This is the part that slows down brain circuits and keeps us from having outbursts of movement or vocalizations, and it is often a part of the Tourette syndrome. So sometimes functional work on the indirect pathway with a functional neurologist can help in small or large ways. Further, when moving body parts quiets a spasm or tic movement there can be a potential for a peripheral muscle injury that perpetuates the cycle, not just a brain -based problem. If so, methods that reset the sensitivity of muscle spindle cells inside chronically strained muscles such as counterstrain, PNF stretching and other "muscle energy techniques" which are real recognized neurological phenomena-not mystical energy medicine-may help reduce the gain experienced by the central nervous system nd recycled back to the muscle as a tic or spasm loop. We will add a resource section for you to follow to find help around the world, and don't forget that basal ganglia parts of the brain are really sensitive to heavy metal toxicity, so consider examining heavy metal chronic exposure, which does not show up on a blood test for heavy metals. Keep us informed.
Dr. Pierce's clinics are in Newport Beach, California, Las Vegas, Nevada and Denver, Colorado. You can visit the clinic website ifixspines.com/ where you will find phone numbers for either of those clinics in the top right corner on the main page. You can schedule an appointment by calling one of those numbers (depending on the location that works best for you). If none of these locations would work, here are some more resources and other options for you to find neurofeedback practitioners - www.BCIA.org; for chiropractic neurologists - www.ACNB.org; and for QEEG analysts - qeegcertificationboard.org/. Finding functional medicine doctors can be challenging due to the varied levels of expertise in biochemistry you will find. Some do food and diets really well, and others use complex lab tests to refine and target nutritional supplement regimens to support very specific biochemical pathways and even gene mutations. Sometimes we are persecuted for not using the standard diagnostic and treatment coding system to solve practical problems and I think those critiques are thin and tone-deaf. Interview your candidates thoroughly and see if they have a reputation. We plan to offer more educational and fun interactions, courses and classes for those of you who need more personal attention next year in 2022-but we will not be diagnosing or treating patients-just explaining every element of wellness and the biology of Your Health Journey. Stay tuned, and let us know if you want more direct access to education and we will move faster. Teaser item for 2022: We are working on online general education projects for next year for those who are far away from us. Let us know if you are interested. Hope this helps and thank you for watching our channel! *Currently the ACNB website is under construction and should be back online soon. Until then, you may email executivedirector@ACNB.org for a personal response for locating qualified doctors.
Additional free resources:
"Functional Neurology" Playlist - ua-cam.com/play/PLj6rgu4f9-ftL4Zj7nW8tO9bQvCxVOkFh.html
Book Mentioned in the video:
Excitotoxins: The Taste That Kills by Russel Blaylock - amzn.to/3A0lxOg
Supplements mentioned in the video:
Potassium - amzn.to/3un7d10
L-Carnitine - amzn.to/2ZKhKrR
Magnesium - amzn.to/3iiTcN8
Zand Immunity Elderberry Zinc HerbaLozenge - amzn.to/2WoMKw6
L-Theanine - amzn.to/3im5014
I’ve been diagnosed with dystonia when I was 7 years old. It has effected my life in every single way. It feels nice to know that there are people who know the type of struggle I’m facing.
I had a major surgery at 12 years old which helped a lot but it hasn’t fully cured me. Thank you for this amazing video
Ive had Dystonia since I was 5year old, although I was diagnosed essential tremor until 2 years ago. Its totally ruined my life tbh. With shaking body arms, legs. Also struggled with confidence, depression and anxiety. Now im in my 60s, neck tightens, pain in shoulders back, cramping legs and toes. My throat tightenes and some days i struggle to swallow. It affects my eyes. I Struggle with being out of breath. I do have jerks and I do call out sometimes. The only plus is sometimes people tell me that I look really young, Im ready for knackers yard tbh
I've suffered with dystonia of both feet, toes and middle finger on my left hand constantly for 10 years. I've seen neurological specialist in NY, GA, NC and OH and no one had a clue. I literally diagnosed myself from viewing YT videos and Google this month. It's sad to realize this condition is not curable but it's a relief to finally put a name to it. I wish to God it would stop on it's own because it's extremely uncomfortable. Life is something else.
That is rough. Sometimes chiropractic neurology can provide some comfort or palliative care for conditions like this even though they are not curable. Good luck and thank you for watching our channel.
I’ve had this for about fifteen years after being prescribed Effexor. Of course, no doctor diagnosed it. I just stumbled on the topic in other reading and thought, “That sounds a lot like what I do”. It’s amazing that Google and UA-cam can outperform doctors with a dozen years of medical training.
You might want to consider the Feldenkrais Method or Hannah Somatic Education. Both help the brain to learn how to move better and reduce spasticity. Both have helped me a lot.
@NubianJourneys I'm sorry to hear of your pain. I am grateful to learn others have individual fingers that do it. My pinkie on my left gets so tender it feels like nerve damage. I've so much to learn. It can't be adequately researched to much thanks
Iam glad i don't have dystonia i have read about it for the people who has dystonia i am praying for y'all god bless y'all i hope one day y'all will be cured from this
Thank you!
Excellent information and discussion on dystonia. Thank you so much. 🙂
I feel like I'm being judged for someone on drugs. Mine is worse now at 65 but feel I've been undiagnosed for years. Always weird in social settings & on the job or anything. I drank for years to be able to socialize. But now on some days are so awful to even try to walk in a store. Praying for healing 🙏 God bless everyone. I'm at least relieved to know what is wrong. Do not have surgery before seeing a neurological Dr. I also have problems with lock-jaw. My sister has this to. My mom had the shaking of the head. My arms are numb a lot & my legs to not as bad but depends on what day it is. Arthritis too.
This sounds like more complex than typical hemorrhoids. When there are muscle contractures in other body parts that include both skeletal and smooth muscle, and movement disorder type symptoms we need to look at other drivers of the condition, such as mineral balance, chronic heavy metal burden, toxic chemical exposure, genetic dystonias, central nervous injury, and many others. This is a challenge that is more than just the everyday-thank you for your story and good luck!
I nave Dystonia and my whole body moved and even my vocals chords, made me studder, like I used to when I was a child, I'm not shaking like I use to do in fact , you may think I don't have Dystonia ,but I've learned how to hide it ,I still have shakes ,just don't like going out when it decides to remind me it's still with me
Thanks for your story. How did you improve the condition? Diet, brain exercises, rest, alternative methods? Was it caused by medications or commercial toxins? Thank you.
Thank you Doc. I really love your explanations on dystonia. Well done!
Thank you ,so much.I have miss misdiagnosed.So many ,Times!
I don't know what hurts more my muscles or the years it took for a proper diagnosis
Amen! 😊🫡👍
Took about 9 years for me. Went thru 5 remission periods in that time. Now of course , no more remission 😂
I hope that means you are doing better. I'm still getting all my pt and other plans in place. I couldn't have a better doc .@dowtingtomas.695
@karlaolsonmendell8459 I'm glad you are getting things in order! It took 20 years of being called a liar, exagerator, & a hypochondriac before being diagnosed with generalized dystonia. What got the V.A. to give me genetic testing & a diagnosis? A gadzillion pics documenting "spasms" in my entire body & when a new neurologist asked me if anything helped when I had "dystonic storms." I said I shouldn't tell you, but if I take 2 shots of vodka, it calms my intensely painful spasms like "oil on water. " I still can't finish a single beer on a hot day while bar-b-que'ing, but myoclonic dystonia responds to a specific 2 ounces of alcohol. LOL, more than that, I get a hangover WITH dystonic posturing! Not fun. All that to say, tell your medical team EVERYTHING no matter how trivial or odd. It just might be a clue! Take care!
I'm learning the more I learn, the more I actually knew. I just have the proper terms now . More appointments are upcoming 2 today, adding 3 more . I'm grateful to be heard and I'm grateful to listen
What a brilliant video !
I wish this video also talked about neuro plasticity and how it can be a game changer in dystonia recovery. This is old school info. Neuro plasticity is real and transforming ppl with dystonia to living a symptom free life
For sure thanks.
Can be, being the operative words. Unfortunately wasn't for me.
I hope you find some improving factor.
My son is 18 yrs old now, we noticed spasms when he started learning to eat at 2 yrs old… he was diagnosed with dystonia, but I’m not 100% sure it’s even this, because I haven’t found anyone that has his same symptoms. He can write or drinks from a cup, his whole upper body jerks and he says it’s now affecting his vocal cords…it’s more on his upper torso, when he spasms it affects his legs too, I don’t think his legs spasms, but since his torso is jerking and affects his legs
This is wonderful all what the doctor said and explained is what is happening to me I’m recommending this to all my wonderful family, and close friends so they get it , thank you I feel relived to know I haven’t gone mad . Fantastic insight and explanations for me , England
Wow, thank you
Hey there I'd love to see one done on Congenital Mirror Movement Disorder! There doesn't yet seem to be a single video really discussing it!
We will work on it! thanks
Doctor please add one more reason for dystonia. Taking antianxiety medications like Triflouperazine
yes many meds thank you so much!!
Metronidazole another name for this medication is Flagyl given for infections cause Torsion Dystonia .
This was not in the medical books 40 years ago when my son had an infection in his foot through standing on a nail . I read all about this condition then and everything pointed to the medication he was given in hospital. It is now in the medical books ,it's not always gene related as my son had a test a few years ago and the results where negative.
I knew from the beginning it was the medication that caused it. It's a long story ,so will stop here .
Thank you @freemebaby26
My son has been having these events these events after a GI flare It’s when he is in the hosptial and the first few times it only loaded it few minutes but is now 5-12 hrs. We are scared but the hospital doesn’t seem overly concerned. They just give him Ativan until it stops
Please check out the book neurobehavioral disorders of childhood by Melillo and Leisman-there are GI problems that trigger movement problems called PANDAS and PANS. Please tell us what you learn and let us help.
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 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!
Truly brilliant summary! Yes. thanks for adding the Taubman approach for our viewers too. I would add that genetic tendencies are known, and I believe supplements can compensate for most of these. I would also add that neurotoxicity is a rising problem in dystonias and autism. I would test for mold, heavy metals, infections, parasites, insulin resistance, aluminum, heavy metals, and look at pesticides, solvents, fire retardants, GMOs and fluoride.
@@TheHumanCondition I totally agree! In fact, lots of neurotoxins are small, but there in many common everyday foods such as aluminum 3+ in cakes and muffins. Now that I think about it, genetics truly are a big factor! For example, I found out that my grandpa and great-grandmother both have dystonic tremors as opposed to my condition which is involuntary curling.
Thank you @normanlu8382 for your candid comments!
my big toe twitches and rubs constantly until severe pain as well as causing blisters where i have to tape toes together to control it. stress seems to bring on severe symptoms until i can barely walk. condition started after falling 30 feet and fracturing L1 L2 and L4 no surgery was done to fix spine and i recovered almost back to normal but the toe pain is severe.
While its not reasonable to diagnose or treat here, lets explore possibilities. Injury to autonomic nerves in the spinal cord or peripheral nerves can lead to a blistering, pain or poor wound healing-I would ask about second opinions from functional neurology and medicine docs locally. Let us know how it goes.
I wonder if upper cervical -- loose ligaments are playing into this.....
dynamic motion X rays should help reveal your hypothesis. Good thinking!!
My son was diagnosed with Generalised Primary Dystonia at 6 years old. He is now 19. It never progressed and he had never and has never had any prolonged spasms. I always doubted the diagnosis, but he was diagnosed by 3 Paediatric Neurologists. He did try a course of dopamine but was deemed non dopa-responsive. His movements are more 'wobbly', lack of 'centre/core', drooling, I do wish I had more answers.
While I cannot diagnose or treat here, if it was me I would
1. check hair heavy metals and urine toxic manmade molecules due to the sensitivity of the basal ganglia to these. The BG drives movement disorders.
2. I would check the cerebellum for eye movement and balance deficits because the baseline cerebellum resistance to gravity posturally sets the tone for the basal ganglia. So much so that some rehab has to start supine non weight bearing it is profound.
3. consider neurochemistry testing of SNP, Yasko and Walsh for neurotransmitter metabolic problems that fit this scenario. some are genetic and some are organic acids in urine.
4. look at mold and autoimmunity
5. look at insulin resistance and lectin and salicylate, and oxalate intolerance and sometimes Kryptopyroluria urine testing.
I know its a lot, but this is the real deal. Let us know what happens.
@@TheHumanCondition Thank you so so much. Since listening to your video I pulled out all his medical records from when he was 5/6 years old.
He had a clear MRI
He did a L-dopa trial with no effect
Genetic test TFT46
XY Mitochondrial DNA Analysis
Plasma Amino Acids
CK 427 GUEG LFT normal
Audiology normal
Normal U&E's
Liver function normal
Urine organic acids
Blood lactate and kayotype
Renal function normal
CRP
I am going to take your notes to a neurologist.
Let us know what happens.
I have cranial cervical dystonia I’ve had it since I was 8 I have a tilted head and I have a twitch in my neck I also blink non stop when it first came out I was biting down on my jaw like snapping my teeth and yanking my arms it’s so exhausting I wish there was a cure my neck constantly hurts at first I thought I had Tourette’s
Interesting, I wish you well. There are some excellent chiropractic neurologists who might be able to make a difference as well as the upper cervical specific chiropractic methods such as Atlas Orthogonal, NUCCA, Blair upper Cervical, and several other gentle and specific analytical methods that sometimes help. Tell us what happens.
I have cervical and vocal cord dystonia. I don't respond well to benzos and gaba agonists like baclofen, and i've also tried a levodopa trial. Artane isn't available in my country. Breathing is hard and I can't sleep even with a tracheostomy. I use ventilator when it gets bad.
Do you think I'm a good candidate for Deep Brain Stimulation? or are the chances low that it will help me?
I would see a functional chiropractic neurologist first, and consider QEEG and lab testing of metabolism too. There are a lot of pesticides and herbicides and toxins that drive movement disorders and no one wants to talk about it. There are many things to try out there-neurofeedback, tDCS, TMS, PEMF, detoxing, and much more. Let us know what happens.
@@TheHumanCondition I'll try detoxing first. I respond really well to benadryl so my doctor put me on it twice a day. I was already taking magnesium and I find that it helps with constipation. I'll try the other things you mentioned before considering DBS. Thanks.
Also consider 3Tesla MRI with DTO diffusion tensor imaging to study while matter tracts.
Great work Dr . I have been diagnosed with cervical dystonia for two years and I have got injected with botox Botulinum Toxin type A for six times. Every three month, I receive botox injection in my neck as a result I feel a better relief, but after the effect of the botox ends, my condition gets worse and I get muscle spasms and tremor.
I want to know the best treatment for Cervical focal dysyonia .
My bias is toward the chiropractic neurology discipline, and while we cannot make drug claims, we see good supportive care results for many types of dystonia when the principles of functional plasticity are applied. I would find a local DC who is board certified in neurology on ACNB.org (which is undergoing repairs currently but you can email the executivedirector@acnb.org. What to expect? a detailed history, neurological examination, appropriate lab testing and imaging, and a treatment plan that is designed to activate the correct specific brain areas while at the same time not fatiguing those patches of cells. Expect diet changes too for balancing brain chemistry. This is tough to do without training. Keep us informed on your Health Journey.
I'm experiencing the same condition for the last 2years and I appeal for possible assistance please
We are working on more access for all of us to connect and help each other. Stay tuned!
I need to find a good doctor to help me. I had a car accident back in 2013 had to have 7 staples in my head. But I also have a bad past full of trauma. I will sporadically have spasms where I turn my head from side to side. And if i flip up my should and turn my head to the right i can stop it. Or that's just how it ends. I feel the build up like u describe and after it Happens theres a sort of release. I try to fight it and I tense up and it hurts. My neck gets so sore and so stiff. I notice tho when i get cold it makes them happen more frequently. But I also thought I just had Tourette's syndrome. Because sometimes I make noises. Like I'll kinda make like a meow sound or howl. Before I used to just have like a random loud hiccup that sounded a bit pterodactyl like. I still do that every once in awhile. Now it's more if the abrupt meow. But Also more frequent when I'm cold or stressed. Its rather embarrassing. Thank god I work with animals and understanding people. And I'm a introvert 😅 can you point me in the right direction? My neck just hurts so bad sometimes. Kinda like when you have a orgasm your muscles tense up 🤷♀️ cept pleasure you get pain with this spasm. Idk how to describe it. But your the only person Iv seen describe it so accurately. Any tips and advice is much appreciated. Thank you
This is not individual health advice-just commentary for discussion on concepts-here we go: When features of buildup and tics or spasms occur with vocal explosive utterances we look carefully at the subthalamic nucleus as part of a struggling indirect pathway of the basal ganglia. This is the part that slows down brain circuits and keeps us from having outbursts of movement or vocalizations, and it is often a part of the Tourette syndrome. So sometimes functional work on the indirect pathway with a functional neurologist can help in small or large ways. Further, when moving body parts quiets a spasm or tic movement there can be a potential for a peripheral muscle injury that perpetuates the cycle, not just a brain -based problem. If so, methods that reset the sensitivity of muscle spindle cells inside chronically strained muscles such as counterstrain, PNF stretching and other "muscle energy techniques" which are real recognized neurological phenomena-not mystical energy medicine-may help reduce the gain experienced by the central nervous system nd recycled back to the muscle as a tic or spasm loop. We will add a resource section for you to follow to find help around the world, and don't forget that basal ganglia parts of the brain are really sensitive to heavy metal toxicity, so consider examining heavy metal chronic exposure, which does not show up on a blood test for heavy metals. Keep us informed.
Dr. Pierce's clinics are in Newport Beach, California, Las Vegas, Nevada and Denver, Colorado. You can visit the clinic website ifixspines.com/ where you will find phone numbers for either of those clinics in the top right corner on the main page. You can schedule an appointment by calling one of those numbers (depending on the location that works best for you).
If none of these locations would work, here are some more resources and other options for you to find neurofeedback practitioners - www.BCIA.org; for chiropractic neurologists - www.ACNB.org; and for QEEG analysts - qeegcertificationboard.org/.
Finding functional medicine doctors can be challenging due to the varied levels of expertise in biochemistry you will find. Some do food and diets really well, and others use complex lab tests to refine and target nutritional supplement regimens to support very specific biochemical pathways and even gene mutations. Sometimes we are persecuted for not using the standard diagnostic and treatment coding system to solve practical problems and I think those critiques are thin and tone-deaf. Interview your candidates thoroughly and see if they have a reputation. We plan to offer more educational and fun interactions, courses and classes for those of you who need more personal attention next year in 2022-but we will not be diagnosing or treating patients-just explaining every element of wellness and the biology of Your Health Journey. Stay tuned, and let us know if you want more direct access to education and we will move faster.
Teaser item for 2022: We are working on online general education projects for next year for those who are far away from us. Let us know if you are interested.
Hope this helps and thank you for watching our channel!
*Currently the ACNB website is under construction and should be back online soon. Until then, you may email executivedirector@ACNB.org for a personal response for locating qualified doctors.
Can continuous biting of the tongue and cheek be art of dystonia? I was diagnosed 12 yrs ago and my head sits on my left shoulder and is tipped down on my left breast.
Such biting of tongue could be a dystonia or it could also be part of a larger tardive dyskinesia if there is a psychiatric medication history-this often involves lip chewing and limb and head movements. Let us know what happens.
My son, who is 2 years and 8 months old, has had spasmodic movements for over a year. I have been trying to research and find the name of this to try to help him but one of the peds told me, some kids may have this. It looks like he clenches his fists and sometimes he even open his mouth simultaneously for several seconds. Similar to when he is cold but much more intense. Well, he would do that for excitement, for anger, for anticipation to things, for any reason several times a day. Some days less than others. It was extremely odd and worrisome my parents and myself to see him doing that without any explanation. Well… due to some developmental delays and GI issues I started dairy and gluten free diet with him. He’d had issues with dairy before so I started to cut dairy first, after one month of being diary free, the tremors or movements continued. Then I slowly started to eliminate gluten, when he cut gluten off completely, the movements disappeared. I noticed the first day he didn’t do it and I thought it was a coincidence, then I started observing to try to see if he would do it, nothing. One day he ate regular crackers. That day he had the movements twice. I started researching about this connection and found that sometimes gluten affect cerebellum (in some people). This video was very helpful to me and I hope what I just said is helpful to anyone who might need it.
They need to come out with an award for parents like you
Sir iam suffering from writer's cramp if any treatment for this decease
Look for a physical therapist or massage therapist or chiropractor who has experience with movement disorders. Also talk to your doctor about balancing electrolytes and checking kidney function to be safe. Sometimes electrolyte (salts) imbalance or caffeine or even dehydration can trigger cramps too. It may be dystonia or cramps or something else. If you cannot get answers get a neurological exam. Tell us what you learn on Your Health Journey so we can all learn.
Can dystonia cause muscle contracture?
Sure, but not exclusively. Cause is an interesting term. Let's unpack this. Dystonia is involuntary muscle contracture or tremor in a region of the body triggered by the brain-specifically the extrapyramidal system which includes the basal ganglia and the cerebellum circuits. It is often progressive and gets worse. there are many other muscle contracture diseases that are not called dystonia, too. What causes the basal ganglia to misfire? Well, genes, trauma, heavy metals and other poisons, infections, and PTSD or emotional trauma are all possible triggers. Thanks.
I'm having this sort of disease
Doctor suggested me physiotherapy
Involuntary folding of fingers in legs and hands, head tilting towards any side for nearly 10 seconds mainly while running is any sort of dystonia sir?
It does sound like dystonia, although I cannot diagnose with this info or on this forum. You know my bias is toward chiropractic neurology for this kind of symptom-I am a big fan of physical therapists, acupuncturists and osteopaths too when they study functional neurology. Thanks for this-find a clinician who gets into this and tell us what you learn on Your Health Journey.
Sometimes there are epileptic transient waves in these cases driving some symptoms. If nothing works, I consider EEG/QEEG in these cases to look for transient irregular brain waves-over 20 minutes of data collection with mixed eyes closed and open have a bout 50% chance of catching these.
Hi bro, how are you now
can mold have a similar effect as heavy metals do?
It can. In fact Dr. Amy Yasko discusses the concept that heavy metals drive mold metabolism as a fuel for mold, and mold can accumulate heavy metals. Consider the GPLmycotox lab test for mold toxins in urine from great plains lab in Kansas city, USA
Good evening:
I have an office work which requires me to me sitting and looking down reviewing documents. When I look up I feel ny neck starts shaking mainly on the left side. I tend to crack my neck a lot and feel it’s easier to do it on one side than the other. The discomfort I feel on my neck goes down my left arm. When I feel my body tense I feel it from my cervical, down to my throat to my stomach. When I try to exercise (sit-ups for example) my body shakes and I’ve been going to the chiropractor and massage therapist and see no results. It’s been a year since I noticed this problem and don’t know what to do. Any suggestions doctor?
I do thank you in advance for your reply.
Great description-very thorough. I would meet with my chiropractor and discuss what can be done next, from changing techniques, to getting a neurological exam, to flexion-extension and side bending x-rays to a second opinion from another doctor of chiropractic that your chiropractor trusts. Even nutritional aspects such as magnesium deficit could contribute to symptoms. Let us know what happens.
@@TheHumanCondition I DO THANK YOU VERY MUCH FOR TAKING THE TIME TO READ MY COMMENT AND REPLYING. CURRENTLY WORKING IN GETTING A SECOND OPINION. THANKS AGAIN.
would it be possible for movements like this to only appear while under stress... asking for a friend
Yes, the basal ganglia is largely responsible for spontaneous movements and it is highly susceptible to emotions and stress.
Could dystonia cause involuntary movements of the eyes like a pendulum? Especially with eternally tense painful neck muscles with limited movement. Balance issues with tinnitus, brain fog and occasional vertigo. Brain MRI looks good and the doctors have no idea what is causing the eye movements. Any advice please.
The short answer is yes dystonia might result in eye movements that are involuntary. Because the visual system and the spinal system are so integrated especially in the cerebellum and brainstem, the MLF or medial longitudinal fasciculus carries signals to the eyes that strive to compensate for the head movements or tremors sometimes. The nervous system is trying to be helpful and resolve the visual errors produced by the head movements. These eye movements are often compensatory for the dystonic head movements, but in cases of brain injury + dystonia they may fail to compensate. Remember that dystonia is so often triggered by brain impacts due to certain DYT genes. Evolutionary biology always tries to compensate because we are evolved hunters from the stone age, and we cannot hunt food animals if our head and eyes cannot coordinate to track running prey as we chase them down on foot. I also suspect that basal ganglia based dystonias will grow as Americans fail to identify chronic slow heavy metal exposure and aluminum exposure. Great question, thanks.
Certainly sounds a lot like a nystagmus but then your doctors would have easily been able to to identify a nystagmus and which type as they're very common and very frequently seen with different types of vertigo.
Can dystonia post stroke be treated? My dad has it bad in his right arm. Has no clear control over the movement. I noticed in his voice as well, it cause his voice to catch and spasm sometimes.
I have seen good responses- check ACNB.org for a chiropractic neurologist near you for help.
Hi doc, need your advice.. my brother has been diagnosed with generalised dystonia since 2018... medication and botox didn't help.. should we plan for deep brain stimulation?
That can help, but I tend to try lab testing, EEG guided neurofeedback, detox, diets, and chiropractic neurology first.
I have dystonia. Had it since 7 or 8 yrs. old. Very painful. ALL my muscles are affected.
Look for a board certified chiropractic neurologist on ACNB.org doctor locator tab for natural approaches and tell us what happens.
@TheHumanCondition Thank you. I will.
I also feel like dystonia, my right side of my body is spasmed (neck is tilted to the left, arms 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 and move suddenly if my level blood pressure and blood calcium are low so this happens many times a day. Contrary, i have a little system if my level blood pressure and blood calcium is normal. I was diagnosed with fahr syndrome.Do I have dystonia, doctor?
I dare not diagnose from here, so I will say that Fahr syndrome is in the category of basal ganglia based movement disorders, as is dystonia. This is a semantic issue and all fit in the category of basal ganglia movement disorders-some are genetic and some are more metal poisoning or other toxins, some are dental material reactions, and some are traumatic or even emotional at their root, and many other causes. Good question.
Hey how are you I'm going thru the same thing and would like to know how you are doing and did you figure it ou
I’ve had dystonia since 2019. Both hands, feet, legs, neck & both sides of my diaphragm. It’s a nasty, nasty thing. When I get spasms in my hands, I can’t hold onto the steering wheel if I’m driving. When I get them in my diaphragm, it makes it hard & painful to breathe. I also have MS & a severe degenerative spine disease, but dystonia spasticity is the worst fucking pain I have ever felt in my entire (60y) life. Love 💕 to all who are living with it.
Look for ACNB.org to find a board certified chiropractic neurologist for more natural alternative answers that are science based.
@@TheHumanCondition Not sure who u r, but in my 30 years of dealing with MS, Dystonia, & chronic pain, that is the stupidest advice I’ve ever gotten. I see the head of Neurology at one of the best hospitals Boston. But yeah, I’m sure you’re right.
There is a large alternative neurology field that goes back 100 years, I was surprised to learn that not all wisdom is found in orthodox medicine, and there is a lot of problematic explanations in orthodox neurology. Good luck let us know what happens. My training was part of the American chiropractic Association council on Neurology, the ACNB.org does the certification.
I got cevical dystonia that started 48 hours after my first vacine. It is a year later now and it is getting worse have been treating with cyropratic and massage for a year or so and it seems to not be helping.
Great story thank you for telling us what happened to you.
I've been diagnosed with dystonia or should I say the Neurologist said impression. The ECG muscle test needles stuck into my back seemed to confirm this. I can't stand without wobbling and gait is affected. Sitting is good cycling good and sleeping ok. My bloods all normal although b12: abnormal in results. It can affect mental wellbeing. I'm thinking try Botox injections. The Neurologist said try tritrihexyphenidyl that will take the pain away but not sure forever. All my strength is ok core strong but abdominal muscles could be better
OK I would try the nutrition work of Walsh Research Institute, and Amy Yasko SNPS and B vitamins. I would also try Paul Saladino's Carnivore Code book. I would also see a chiropractic neurologist to assess the limbic brain and cerebellum, among other structures that stabilize posture. Also consider mast cell activation syndrome as a part of dystonia in some cases, and don't forget to measure hair heavy metals and synthetic chemicals in urine from Great Plains lab in Kansas. Let me know what happens.
@@TheHumanCondition I'm currently taking b12 vitamin daily as that should up in a blood test as abnormal. I'm thinking try multivitamins after this. Dizapam the Medication I'm on at the minute isn't working. Baclofen was mentioned but the Neurologist said try tritrihexyphenidyl and that will get rid of the lower lat muscle tightness which is the only pain I'm getting. I get into a swimming pool once a week feels great. My brain scan was normal and lower back scan normal.
Can you find a chiropractic neurologist on ACNB.org?
I am shivering when im writing notes anf
Some times writing smoothly without shivering
Please tell me what is problem and cure
May need an evaluation of cerebellum or metabolism, check doctors on ACNB.org across the world doctor locator is found on this site.
Dear Sir... I have suffering right hand specific dystonia since from 8 years... Using everyday tablets Pacitane & Betacap... I need help from India
Humanconditionlab.com opens soon and locals.com will have us too. ACNB.org shows many countries with functional neurologists, but India is poorly represented by our group. We hope to offer more from Dubai to India in future! Thank you so much!
I'm suffering from focal dystonia since 5 years it feels extremely uncomfortable I'm from India and there is no proper treatment in India. Does deep brain stimulation help and how safe is it?
I follow the path of Hippocrates which says primum non nocere-first do no harm, which implies that one should move from least invasive to more invasive. That means to look for gentle methods first before strong methods. DBS is a strong method and there are others less intense one could try first: tDCS, LENS, infraslow fluctuation or s-LORETA or multivariate coherence (Coben) neurofeedback, chiropractic neurology, basal ganglia detoxification and heavy metal hair testing, glyphosate testing, gluten antibody testing, elimination diets, SNP testing, mold testing and detox, and more. Good question!
@@TheHumanCondition thank you🙂
Well i think i have dystonia, should i see a neurologist? or a regular doctor?
Most people start with their regular GP on their health insurance plan, and the GP can refer to the specialty neurologist as required. Once the patient has been screened, they get to a decision point to try orthodox medicine, or to try alternative medicine, or a combination. No one knows the ultimate answer and there is risk to either decision. Good Luck! Tell us what happens.
@@TheHumanCondition What is a GP? I’m sorry it’s just kind of weird to talk about to people, especially my parents, I don’t wanna be deemed disabled or something, or people to look at me differently, or have a problem working as well, I’m only 20.
Oh sorry-A GP in the US is a general practitioner-usually an MD who is the portal of entry doctor for most insurance plans. Often a skilled nurse can triage people into diagnostic categories and get the process of medical diagnosis started. Alternative medicine can help most frequently when the condition is chronic and especially after orthodox medicine completes its diagnostic work. Only then can they discuss all treatment options and admit that outside options exist. No treatment is also always an option, and all choices have consequences that are unforeseen.
@@TheHumanCondition hello sir. doctor where you from? are you located here in los angeles california if so i would like to get appointment with you in the future. i do have a lot of health issues especially this past month im having cervical dystonia symptoms. im not into my doctor they’re not that much care and the meds they always prescribe are not helping at all. thank you
much better find neurologist especialist in movemwnt dis order
how do u help a 3 year old with movement disorder of the head, eyes and those that resemble facial tics
Get a history, neuro exam and labs and look for ACNB.org doctor locator.
How is the baby now?
also consider toxicity testing in kids with movement disorders.
Taking a high dose of magnesium has helped me
thanks for telling us !!
I read up a lot about the different forms of magnesium and Dystonia. The concensus is Magnesium Glycinate is the best form of Magnesium to take. I take one Qunol 450mg capsule in the a.m. and p.m.
Please can you help my son he lives with generalised Dystonia it is so bad he needs support
Go to ACNB.org doctor locator for a chiropractic neurologist and let us know how it goes.
@@TheHumanCondition we live in New Zealand. There is no help for my son here
Stay tuned to youtube we are working on online communities for you go to our website humanconditionlab.com as we build it out.
My feet lock its excruciating painful. I cant walk i just fall when i try to walk. Is this a type of dystonia.
Not sure, I would start with electrolyte balance with sodium, potassium, chloride, magnesium etc. and then check reflexes. This would help a lot. If there is white matter damage MRI should find it in the brain and spinal cord. Let me know what happens.
also look for one of us on ACNB.org to find a skilled neuro examiner.
I already have 7 white patches in my brain from an unknown cause from 20 years ago.
I see white matter changes in the brain or spinal cord from autoimmunity to foods, toxins, heavy metals, or insulin resistance driven oxidative damage. There is a lot of hope I have seen many people reverse this type of problem.
Hi doctor, my mother 55 years old, suffered by head dystonia over past 30 days..now heads shaking frequently and couldn't able to walk and getting pain in neck also..doctor May I know is it cure by treatment.. Can u give any suggestions on that.Thanking you
I am biased toward chiropractic neurology, but find any doctor and get a diagnosis to start.
You can consider neurofeedback practitioners from BCIA.org, and chiropractic neurologists from ACNB.org, and QEEG analysts from qeegcertificationboard.org/
I had no idea.
Does anyone have dizziness with dystonia?
We can see it in autoimmune patients and in toxic burden, consider these and let us know what you find.
My brother have a dystonia now.. 😢
Keep us updated.
@@TheHumanConditionhe suffered now muscle movement
cervical dystonia patient Bangladeshi, give me treatment & medicine name give me
ACNB.org may help-in 2024 we will have more options for you in Bangladesh thanks!!
Science is so far behind on dystonia. I suffered for years, only ever getting worse with treatment. Finally when I started considering giving up I tried ayahuasca just to see.
It worked! With psychedelics I was able to interact with the sensations that cause the dystonic reactions... without reacting. I was able to ask myself why I tremble and shake and realized it was fear of pain. Realizing I wasn’t afraid of the pain at the moment, I started working to change my relationship with the pain.
It’s taking a lot of effort and sure isn’t pretty but my brain is now fully aware that it is the source of my troubles. The tremors have gone down tremendously and when they do start, they don’t run for very long before my brain goes “oops 😅” and stops the contractions. And it learns what movement set off the tremor and I feel my brain let go of that bad pathway.
Before trying ayahuasca I was turning into the curled up ball that can’t breathe or eat. I used to throw up from chocking on my own throat. Now I’m in the gym several times a week and out hiking in the woods, happily balancing on fallen trees surrounded by thorns.
It feels like it’s giving me my whole life back. Though I don’t know that I’ll ever feel like I used to, I have such better days now than before the accident. I’m stronger too! Setting new personal records on my squat and deadlift even though my legs are very, very hard to use. About 5 months ago I had a thought that if I could rebuild my neck nerve by nerve I will recover. In time, that’s what’s happening!
Great story thank you again.
I have seen nerve regeneration from IV alpha lipoic acid and NAC, let us know how you do.
@@TheHumanCondition will look into both of those, thanks! Will try and leave an upddate around the time im fully recovered!
That is amazing, great job!
@@nataphillipaworldthanks friend! 😊
I am too victim this dystonia
Sorry to see that-I hope you can find a good chiropractic neurologist through www.ACNB.org doctor locator tab. Let us know what happens!
Better word you can not have. Victim because it is a crime when someone has to live with D.
Imam ovo 6 godina (sada imam 52)Glava mi ide na levoj strani, moze i na desnoj ali pravo nikako!!!!!Nemogu glavu da drzim pravo odma sklizne u levo.
Radjen mi je botox1-2godine, vise ne zelim...nije puno pomoglo
Pomaze mi malo Biokubernetik i igranje, plesanje...pokreti celog tela.
Uzomam D3 K2, zink,B12, C vitamin
I need a translation sorry
A uncle of my died if this he fel on his head become dystonia
Thank you for the story of your uncle. This is a real problem, and falls might be prevented if more people did balance training after 50.
I need to find a good doctor to help me. I had a car accident back in 2013 had to have 7 staples in my head. But I also have a bad past full of trauma. I will sporadically have spasms where I turn my head from side to side. And if i flip up my should and turn my head to the right i can stop it. Or that's just how it ends. I feel the build up like u describe and after it Happens theres a sort of release. I try to fight it and I tense up and it hurts. My neck gets so sore and so stiff. I notice tho when i get cold it makes them happen more frequently. But I also thought I just had Tourette's syndrome. Because sometimes I make noises. Like I'll kinda make like a meow sound or howl. Before I used to just have like a random loud hiccup that sounded a bit pterodactyl like. I still do that every once in awhile. Now it's more if the abrupt meow. But Also more frequent when I'm cold or stressed. Its rather embarrassing. Thank god I work with animals and understanding people. And I'm a introvert 😅 can you point me in the right direction? My neck just hurts so bad sometimes. Kinda like when you have a orgasm your muscles tense up 🤷♀️ cept pleasure you get pain with this spasm. Idk how to describe it. But your the only person Iv seen describe it so accurately. Any tips and advice is much appreciated. Thank you
This is not individual health advice-just commentary for discussion on concepts-here we go: When features of buildup and tics or spasms occur with vocal explosive utterances we look carefully at the subthalamic nucleus as part of a struggling indirect pathway of the basal ganglia. This is the part that slows down brain circuits and keeps us from having outbursts of movement or vocalizations, and it is often a part of the Tourette syndrome. So sometimes functional work on the indirect pathway with a functional neurologist can help in small or large ways. Further, when moving body parts quiets a spasm or tic movement there can be a potential for a peripheral muscle injury that perpetuates the cycle, not just a brain -based problem. If so, methods that reset the sensitivity of muscle spindle cells inside chronically strained muscles such as counterstrain, PNF stretching and other "muscle energy techniques" which are real recognized neurological phenomena-not mystical energy medicine-may help reduce the gain experienced by the central nervous system nd recycled back to the muscle as a tic or spasm loop. We will add a resource section for you to follow to find help around the world, and don't forget that basal ganglia parts of the brain are really sensitive to heavy metal toxicity, so consider examining heavy metal chronic exposure, which does not show up on a blood test for heavy metals. Keep us informed.
Dr. Pierce's clinics are in Newport Beach, California, Las Vegas, Nevada and Denver, Colorado. You can visit the clinic website ifixspines.com/ where you will find phone numbers for either of those clinics in the top right corner on the main page. You can schedule an appointment by calling one of those numbers (depending on the location that works best for you).
If none of these locations would work, here are some more resources and other options for you to find neurofeedback practitioners - www.BCIA.org; for chiropractic neurologists - www.ACNB.org; and for QEEG analysts - qeegcertificationboard.org/.
Finding functional medicine doctors can be challenging due to the varied levels of expertise in biochemistry you will find. Some do food and diets really well, and others use complex lab tests to refine and target nutritional supplement regimens to support very specific biochemical pathways and even gene mutations. Sometimes we are persecuted for not using the standard diagnostic and treatment coding system to solve practical problems and I think those critiques are thin and tone-deaf. Interview your candidates thoroughly and see if they have a reputation. We plan to offer more educational and fun interactions, courses and classes for those of you who need more personal attention next year in 2022-but we will not be diagnosing or treating patients-just explaining every element of wellness and the biology of Your Health Journey. Stay tuned, and let us know if you want more direct access to education and we will move faster.
Teaser item for 2022: We are working on online general education projects for next year for those who are far away from us. Let us know if you are interested.
Hope this helps and thank you for watching our channel!
*Currently the ACNB website is under construction and should be back online soon. Until then, you may email executivedirector@ACNB.org for a personal response for locating qualified doctors.