Thank you for your video. I have had ST for 35 years, starting out with a variety of nasty meds, accupuncture, deep tissue therapy (WONDERFUL if you can find a therapist with very an aggressive therapeutic touch), and finally Botox every 3 months. The Botox is my go-to treatment.....I have learned to live with movements and some discomfort.....the ST does not define me and I have found that just living my life with everything that has been thrown my way is something I can indeed handle. I love life.
Wow Tom! You've hit so many points spot on! Towards the end of the video when you stated you are not cured by any means and how you have instituted changes in your life, made me so sad for you, yet here you are, trying to help others with this awful condition. I look forward to watching many more of your videos, you are an amazing man giving us straight up answers and giving all of us hope, thank you so much!
@@TomSeamanCoaching i also wanted to state that it made me so sad that you have lost family members and friends. It's unconscionable that any family member could turn their backs on anyone with this condition. Rather they should educate themselves and try to understand and help the individual affected instead of turning their backs to them, so sad. Feel proud of yourself for how far you have come and know many people look up to you instead of away :)
@@robinreganoconnell4697 I appreciate that very much. I should clarify. There were stages in the last 20+ years that certain family members didn’t understand what I was going through so I lost their support. It has been regained however. It was tough for some to wrap their minds around something chronic because nobody in my family had ever experienced that and they thought I should be better sooner than I was. I can understand their perspective, but the lack of support at different times from just a couple people was difficult, but for the most part my family has been unbelievably and incredibly supportive and I wouldn’t be able to be where I am today without them.
Tom, You have been a great resource for me since I was diagnosed with CD. Particularly your book. I found out I had been taking an over-the-counter sleep aid that could be responsible for starting my Dystonia. The Dystonia Foundation has a list of medications that can do this. I weaned myself off of the medication (I had been taking for years) and within six months, my Dystonia no longer needed treatment (Botox). My neurologist sadly, seemed unimpressed. While I still have a slight head tremor, I’ve been free of symptoms for years now. Not the answer for everyone, but worth exploring for everyone. I also have Ataxia from Celiac Disease. Thank you for continuing to be a great educator for Dystonia.
Thank you so much! That is really nice to hear and so great that you are doing so well!! Strange about the neurologist not taking more interest. It's tough for us to make progress when those who treat us don't get excited about things like this because it could potentially be of great help to other people. Thank again and wishing you continued success!
I think my nine -year-old granddaughter is developing dystonia. She twists her neck and opens her mouth in a weird position. I think she takes melatonin for sleeping at night. Would you tell me what over-the-counter medication you took that you think caused yours. This is really scary in a child.
I am so sorry about your granddaughter. I can’t even imagine what it must be like to see a child or grandchild suffering. I did not take any over-the-counter medication’s that I think contributed to my Dystonia. Except for NyQuil which I took probably too often for sleep. The main medication I took was for seizures called Dilantin, which is one of many medications that our thought to possibly contribute to the onset of Dystonia. I don’t think that mine was caused by this medication. I think it may have been one of the reasons.
That’s interesting you say this I believe medications are largely responsible for my dystonia symptoms I am still In the process of waiting to Get evaluated again and diagnosed as my symptoms have continued to progress sadly. I came off of a few medications at different times within the last 2 years . And believe it or not the slightest amount of taking a medication to help alleviate some of my symptoms mainly tremors and anxiety/ptsd I took ( LDN ) 0.1.mg for 2 days was enough to get my head to start contorting and pulling to one side I suspected Dystonia for months as stiffness and other symptoms were there but it wasn’t until that tiny amount unlocked that beast so to speak , what it told me was my body had developed a sensitivity to medications of sorts besides that tiny amount of LDN I took for 2 days I haven’t taken any meds for 6 months and that time frame was when my symptoms quickly started and rapidly became apparent . I hope Tom can see this message and have a better idea of what I may be experiencing I greatly have been seeing his videos and trust his opinion 🙏
Hi Tom, Thank you so much for posting!! When I first developed cervical dystonia, I went to my PCP, and told her I had severe pain in my head- told her it felt like my head was in vice grips and the pressure just wouldn’t go away. Long story short, as symptoms got worse I lost a great job due to loss of productivity (the doctors should’ve listened to me and put me on short term and then long term disability while they figured out what the problem was); however, my PCP didn’t even write it in her notes when I first complained about the pain. I’ve tried Botox and I’m not responding to the treatment. Do they need to do an EMG to find out exactly which muscles are contracting? FYI- I’m in severe pain every day and it just doesn’t stop. My head isn’t locked, but as you described, I’m finding it very hard to do simple tasks- such as change light bulbs without breaking them, fold paper in straight lines, etc. Thank you!
Ive been ill with this condition for a few years and found this really helpful. You are very right about the effect it has on relationships. I moved back in with my parents when I could no longer keep food in my fridge but have gotten so much worse from the stress. Im not sure what the next step is but with 6 months of hard work my body is starting to straighten out! I see lots of reasons to be hopeful so whatever I have to do to keep the progress going is happening 😊 I thank you for sharing your experiences in such a real way. You have a real gift for talking about the very real challenges of having dystonia without sounding like a victim and it’s really inspiring!
Thank you so much for your message! It was very kind of you. Much of what you shared sounds very familiar to things I have been through. Please don't give up hope because even though you are not sure what the next step is, you will find it. Just keep taking good care of yourself and get as well as you can, and the answers will come. If I can ever be of help, please reach out anytime!
@@SashaKaktus-eo5sp neuro plasticity! I got so frustrated I decided I would rebuild my body nerve by nerve. Focused effort on the upper cervical spine and TMJ. It was not fun or easy and definitely looked like I was getting worse at times. Learning to move without reacting to the dystonia, that is your goal. Where things hurt the most... you gotta learn a new way to move it so you can forget the dystonia. I’m just reflecting on my day, how different it was than a year ago. It’s been worth every bit of effort. I did notice my recovery sped up at least 10x after doing psychedelic therapy. Meditation has been even more useful. Would highly recommend looking up some of Joe Dispensa’s videos on healing with the mind. I only found his crazy content after I was healing the same way. Coulda saved me many months had I found his stuff sooner. Also look up Dr Farias on here. He has successfully treated many cases of dystonia. It’s very encouraging to see people actually can get better. YJ Care Clinic is another great resource. Miracle workers over in Korea that have helped soo many people. I think if you take a look at how simple Dr Farias and the Korean doctors treatments are, you will be able to see a path to healing for yourself. A custom mouth guard/appliance for the jaw by a dentist and chiropractic treatment of the cervical spine may speed things along. I’m doing great without either. It really is as simple as learning new ways to move! Getting your brain to try is the only tricky part. Definitely reach out if you feel lost.
I've had laryngeal dystonia for many years, over the past year I've had signs of cervical dystonia but over the last few weeks it got much worse, now I'm nearly always postured identically to how you looked in your pictures, and the pain is unbelievable. Thanks for posting this video, it makes me feel less alone if anything.
I am so sorry that you are now having to deal with cervical dystonia on top of laryngeal dystonia! I hope you can get some effective treatments for both. Please let me know if I can ever be of help. It is a lonely condition, but you are not alone...
Thanks, Tom! I’ve been anxiously awaiting this video. My big takeaway is that it has inspired me to reread your book Diagnosis Dystonia Navigating the Journey. It seems like I need constant reminders of the things I can do to manage my Dystonia, especially taking time out of my day for me. Thank you for your hard work helping others. I for sure will contact you when I’m ready for more questions. Your video helped answer some of them!
Thanks for your message. I appreciate it and am glad to hear some of your questions were answered in the video, but feel free to contact me anytime for more!
This is such a comprehensive, excellent information for this debilitating issue. One of my dear friends has this condition which has in his case affected his speech. You speak very fluently. At least you can express yourself. Thank you for your help.
Thank you. I really appreciate that very much! I am very sorry about your friend. It sounds like he has dysphonia? That is a form of dystonia that affects the vocal cords. I hope he is able to find some helpful treatments.
@Tom thank you for sharing your wisom and experiences with Cervical Dystonia! I have your book and so appreciate hoe thorough it is. I have been navigating cervical dystonia for 7 years and have learned so much over the years. So grateful for you and all those who have gone before us and all the research that is being done now to help those navigating dystonia! In gratitude 🙏🏽
Thank you very much for such a kind message! I appreciate it so much when I hear how the book and other things are of help. This is such a tough condition to live with, so to know I make a difference means a lot. Please reach out anytime if I can ever help in any way.
Hi Sonya. That's a good question and one I wish I could answer, but pillows are a very individual thing. For me, I like down feather pillows because they are easy to mold into the shape I want them to be for my head and neck. Experiment and use what feels right to you. There is not right or wrong one to use. Good luck!
This information gives me renewed hope. Today in an email with my doctor she referred to my case as "only focal dystonia ". Then proceeded to tell me my hands not working together wasn't because of my dystonia . So nice to think I have to explain this one to. I have 3 Autoimmune disorders that are ONLY autoimmune . Fun in a post covid world
I'm really happy to hear that this was helpful for you and gave you some renewed hope. But at the same time, I'm really sorry that you are dealing with doctors who are so ignorant and thoughtless. This is one of the reasons I try and write as many articles as I can and do as many videos as I can and put as much information out there so that hopefully we can become as educated as possible and hopefully the doctors are also paying attention and we can get more awareness to them to understand better what it is that we go through and that they need to be more compassionate and understanding of our unique needs. All best wishes to you!
@TomSeamanCoaching I will be meeting on Monday with my primary doctor, and I'll be referring her to your books. She is eager to learn more going forward. Some of the problems I believe are down played by neurologists and the primary take their words. I'm just grateful I'm here and can help. My journey started about 30 years ago. Doctors had a tough time, but I stayed persistent . You just need one for who listen I've found one I believe
@@karlaolsonmendell8459 that’s great that you have somebody on your side who is eager to learn more. I have a PA just like that. Even though she says she doesn’t do much to help me, I always remind her that she is always looking for different ideas and possible solutions, while at the same time listening to my perspective and what I think we might want to try. Having someone as a teammate is worth gold to me. I’m glad you have somebody in your corner like that as well.
You're welcome. I hope you find some helpful approaches to managing your symptoms. There are a lot of things out there. Unfortunately we often have to sometimes go through a lot to find what is best for us, including a lot of people with no clue what we have or how how to help. Best wishes!
Many thanks for your very helpful video, I have Parkinsons as well as cervical Dystonia and spinal stenosis so having a much better understanding of Dystonia is really useful. Thanks again
Thank uou for sharing your knowledge and experience. After struggling with pain for two years, I was finally diagnosed with dystonia. I had never heard of this. The pain made my life uterlh miserable.. First botox injection has helped myself pain, and I might need tweeking. I will try other things you have suggested in you video.
I'm very sorry to hear about your diagnosis and I hope that you are able to find some helpful treatments. There are many different things out there so please consider both allopathic and non allopathic methods.
Hello Tom, 3 questions please. My wife has cervical dystonia. Have you ever tried fasting for any relief ? Have you heard about Autophagy? Do you think it may help ? Have you tried a keto or a carnivore diet and would they help?
I’m sorry to hear about your wife. I have tried fasting using Prolon (which promotes autophagy) and did not see any difference in my symptoms. However, I do know some people that have done different fasts, as well as cleanses, and have found them helpful. I have not tried keto or carnivore diets, but that could possibly be beneficial. Any type of anti-inflammatory diet could be of help. Everyone is very different so how we respond is going to be different. I find that eating certain foods and avoiding certain foods to be helpful with managing my symptoms. It’s one piece of many pieces to the puzzle for me, but there are some outliers that will have profound benefit from dietary changes.
Thanks Tom, I have had dystonia with spasms in my neck since 2001 and have been in pain since, have tried everything since then and am still looking for a cure.
Please don't give up your search for something that will help. I know how frustrating it can be, especially after so many years, but we never know what might be around the corner
The titles are Diagnosis Dystonia: Navigating the Journey and the other book is Beyond Pain and Suffering: Adapting to Adversity and Life Challenges. They are on Amazon and also my website that has a lot of other info that might be of help- www.TomSeaman.com
I was diagnosed with CD I can turn to the right and look up but it takes a huge effort and it is painful. NO movement at all. If I stand still i can get my head straight. But once i move and look down my head sticks to the left. I am going for botox soon. I am not as bd as some people are. But is still restricting my day to day life. Driving is difficult I feel like i have ksised my previous life goodbye Luckily I am not young. Kids grown up. Done lots of fishing/camping with them. I hope to do it again one day...
I have both cervical dystopia and meige syndrome and am wondering if you have any advice regarding the meige syndrome which for-me is very challenging.
Meige syndrome can be very challenging to treat. As I’m sure you know, it is most commonly treated with botulinum neurotoxin therapy, but some people have also done well with other forms of treatment that utilize exercise and neuro rehabilitation.
@@tomseaman5543 yes I have been having Botox injection for around 11 years first for cervical and the meige syndrome the last 5 years. Not sure what the Nuro stimulation is. I live in a smaller centre with not a lot of resources, is this something I could do remotely?
Mine went into full remission for six years and it just came back this summer … I am desperate for it to “shut up” again … I hate it. The pain is immeasurable and it’s so embarrassing
I am so sorry to hear that!!! I bet those years in remission felt amazing. The pain is beyond words. Do you know how or why you were able to go into remission and what triggered the onset of symptoms again? Are the symptoms the same as before?
@@TomSeamanCoaching yes. I did several really high doses of psilocybin.. this summer was brought in by a suicide done in front of me at a bar, followed by a drowning at a park I witnessed .. and an affair that shook my whole world up . Lots and lots of CNS overload. I’m getting myself back to the best I can .. I do TONS of research on what makes the basal ganglia even function and what areas do what .. I only have tremors mainly when I lay down now so I have to fight my body to go to sleep. It’s just such a wild disorder
@@ChalcedonyKid79 Wow! Just one of those things is a lot to go through!! I am very sorry. It's amazing how trauma and the CNS are so connected. I hope you can find your way back to remission again. I have the same problem when I lie down. Not tremors so much as hard pulling down and to the right. It happens when any there is any pressure on my head or neck even if standing or sitting. Sleeping is brutal for me as well. Wild disorder.... understatement..lol
I never did the Farias program. I did/do the ST Clinic program. Both take a lot of time, patience, and dedication on a daily basis, without overdoing it. The dystonic body is very sensitive and it doesn't take much for things to improve or take a turn for the worse.
For me that is a last resort if nothing else helped, but it is an individual decision, It isn't necessarily reversible, but if it doesn't work they can remove the hardware.
It definitely seems promising. I don't know of too many people who have had it done in comparison to those who DBS surgery. I think it is still in its infancy which is why I haven't heard much about it. It seems less invasive, but it is not reversible like DBS.
I have been receiving botox treatment for 10 years and swimming for 5 years. For the last year, my throat has started to get tight again due to the noise of my neighbors, I cannot sleep at all, I started to feel bad again due to stress. Even though I have Botox every 3 months, the effect lasts for 2 months. I'm researching torticollis surgery. I started having pain in the area where my spine was more crooked. My voice, like yours, always sounds tense and hoarse. I am a rap music singer, I cannot sing comfortably, I feel bad. Can surgery fix my voice? There are songs on my channel.
It's possible you might be experiencing spasmodic dysphonia, for which Botox very helpful for a lot of people. There is a new botulinum neurotoxin on the market now that is faster acting and longer lasting. Is called Daxxify. You might want to consider this with your doctor.
I have tried a few of the doTerra oils, but not too much relief. I use some hemp based topical lotions I prefer, this one being my favorite- www.tomseamancoaching.com/neuro-soothe-pain-relieving-lotion-product-review/ I am not familiar with taking them orally. I would like to learn more about that
@@TomSeamanCoaching I am a doterra wellness advocate I have used their oils topically and orally. Orally just in the last couple years. I use the neuro symphony of cell routine on a lady friend who is close to 80 years old that has Dystonia. I found your video and just wondered if you had any experience. Thank you for replying. Note: oils taken internally you have to make sure they are tested and therapeutic grade that is why I use doterra.
@@ninasadowski393 thank you for sharing that with me. I had nominal results with some of the topical oils. How is that woman you mentioned responding to them?
Hey , could you tell me the initial symptoms you had when your dystonia was starting? I have neck pain when im working on my computer, doctors tell me it might be dystonia
I had slight restricted mobility turning to my left with a very slight head tilt to the right. That lasted for about a month and then increased in severity over the next several months. Pain started about three months after initial restricted movement and by eight months it was like you see in the very first slide with my head twisted with pain beyond words due to the severe muscle contractions in my neck
I think this may be developing in my nine-year-old granddaughter. She turns her head and opens her mouth in a weird position. Is there anyway to nip this in the bud?
@@TomSeamanCoaching i have been getting botox injections for the past four years. But as of late I think thier effectiveness has started to wear off. I am up to my third type of shot now. i have also been on gabapenten for several years. Several months ago for the first time my local pain clinic did a nerve ablation on the back of my neck. While that did not get rid of the spasms I think it did make them allot less painful. It seemed like it made it allot easier to turn my head to the left. Several of my friends said they noticed a very definite improvement right after I had it done. But i have only had it done once. And that is really itself a very brutal procedure! But I am willing to do that every 5 or 6 months for the rest of my life if I have to to get some relief from this! But I think its starting to wear off at the moment. I am planning on going back again to get it done. But I just woke up one day bout four years ago and literally overnight it was just there. No joke just like that! But my spasms are to the right. I am now 52.
I’m glad to hear the ablation helped a little bit. A friend of mine is getting that done next week. Botox was never of helped to me and I’ve never tried to ablation but it is something I would consider if it came to that.
Thanks. Yes the ablation did help enough so far that I am willing to get it done again. I am sure some of what I watched in your video might help also. One way or the other come heck or high water I will find a way to overcome this disorder!!
Hello sir,my mother complained about her head being slightly tilted to right for a month,we checked up her by a nurophysician,he diagnosed my mom with cervical dystonia and prescribed some oral meds like Levodopa-carbidopa,lacomaside etc and within taking 2 doses she is already feeling much better,i just wanted to ask, will this remission be long lasting or will her symptoms get worse god forbid, please reply
I am very happy to hear that your mom is responding well to levodopa. Regarding her symptoms going forward, I can’t answer that. I don’t know if anyone would really be able to because it all depends on how well she continues to respond to the benefits of the medication and her dystonia, which is very unique to every individual that has it. There is no cookie-cutter answer for anyone unfortunately. Hopefully her symptoms will not return, but if they do, there are other options that can also help.
Just a kind FYI: it’s spelled cerebral, and said, phonetically as “sur-ree-brawl”. Sar-a-brull” is not a word. I am in no way trying to be mean nor trying to insult you. I come from pure kindness and respect 🌹
Thank you very much. I don't even remember saying that word in this video or how I pronounced it…lol. I had a roommate with CP for several years and he and his family would pronounce it in the variety of different ways. I almost always pronounce it the way you said but when making videos with so many words sometimes they come out differently than intended. Thanks again and no offense taken whatsoever 😊
I recently visited hospital, due to involuntary nervous movement, eye, leg & neck movement with stiffness, I was told I hv this said dystonia, hv been following medications very well it seem the symptoms hv still increasingly continue, what can do about it, bcos it comes some pain as well.
I am very sorry this is happening to you. If you are not already seeing a movement disorder neurologist, that would be my first step to make sure of an accurate diagnosis of dystonia or something else. I hope you can find some answers to your symptoms
Hi , thanks you so much I had had it over 4 years 😞very much like you…😢 What about prolotherapy Dr. Hauser talks about in Caring Medical from Florida? My neck moves right when Walk….. I can’t handle it more ❤
I'm very sorry you have it so severe also. Like any therapy or treatment, prolotherapy might be helpful. If it feels like a good fit for you I think it is worth trying.
Different medications have helped over the years. I have used Klonopin, Valium, and baclofen, but there are many others that are potentially helpful for people as well.
Hello sir. I am taking botox with some otal medicine and that helps me a lot but my posture is not still getting proper straight please share some tips how to correct my neck posture.
I am sorry to hear that. I never did well with those things either. Have you tried any of the alternative treatments I mention in the video? If you don't have my book, that might be of help also - www.diagnosisdystonia.com
Just a kind FYI: it’s spelled cerebral, and said, phonetically as “sur-ree-brawl”. Sar-a-brull” is not a word. I am in no way trying to be mean nor trying to insult you. I come from pure kindness and respect 🌹Also, I am grateful for your videos and the respect the time you spend educating others 🌹
There are lots of different names, some of which have been outdated but they all mean the same thing. Torticollis, wry neck , cervical Dystonia, spasmodic torticollis, etc. They all mean the same thing for the most part.
Excelente! Eu optei em fazer tratamento alternativo. Acupuntura p dor Yoga para relaxamento Tai chi Técnicas de respiração para ansiedade Método Self Healing ( Meir Schneider ) Aparelho para dentes ( biocibernetica bucal do Hamilton Ramires em São Paulo - Brasil)
Thank you for your video. I have had ST for 35 years, starting out with a variety of nasty meds, accupuncture, deep tissue therapy (WONDERFUL if you can find a therapist with very an aggressive therapeutic touch), and finally Botox every 3 months. The Botox is my go-to treatment.....I have learned to live with movements and some discomfort.....the ST does not define me and I have found that just living my life with everything that has been thrown my way is something I can indeed handle. I love life.
Thanks very much for sharing your experiences. I love your attitude!
How much does Botox alleviate on a scale of 1-5? 5=diminishes almost all, 1=doesn’t diminish much at all.
Wow Tom! You've hit so many points spot on! Towards the end of the video when you stated you are not cured by any means and how you have instituted changes in your life, made me so sad for you, yet here you are, trying to help others with this awful condition. I look forward to watching many more of your videos, you are an amazing man giving us straight up answers and giving all of us hope, thank you so much!
Thank you so much for all you said! It has been a long journey and I am grateful to be in a position to offer help to others whenever possible.
@@TomSeamanCoaching i also wanted to state that it made me so sad that you have lost family members and friends. It's unconscionable that any family member could turn their backs on anyone with this condition. Rather they should educate themselves and try to understand and help the individual affected instead of turning their backs to them, so sad. Feel proud of yourself for how far you have come and know many people look up to you instead of away :)
@@robinreganoconnell4697 I appreciate that very much. I should clarify. There were stages in the last 20+ years that certain family members didn’t understand what I was going through so I lost their support. It has been regained however. It was tough for some to wrap their minds around something chronic because nobody in my family had ever experienced that and they thought I should be better sooner than I was. I can understand their perspective, but the lack of support at different times from just a couple people was difficult, but for the most part my family has been unbelievably and incredibly supportive and I wouldn’t be able to be where I am today without them.
@@tomseaman5543 that's wonderful then!!!!!!! :)
Tom, You have been a great resource for me since I was diagnosed with CD. Particularly your book. I found out I had been taking an over-the-counter sleep aid that could be responsible for starting my Dystonia. The Dystonia Foundation has a list of medications that can do this. I weaned myself off of the medication (I had been taking for years) and within six months, my Dystonia no longer needed treatment (Botox). My neurologist sadly, seemed unimpressed. While I still have a slight head tremor, I’ve been free of symptoms for years now. Not the answer for everyone, but worth exploring for everyone. I also have Ataxia from Celiac Disease. Thank you for continuing to be a great educator for Dystonia.
Thank you so much! That is really nice to hear and so great that you are doing so well!! Strange about the neurologist not taking more interest. It's tough for us to make progress when those who treat us don't get excited about things like this because it could potentially be of great help to other people. Thank again and wishing you continued success!
I think my nine -year-old granddaughter is developing dystonia. She twists her neck and opens her mouth in a weird position. I think she takes melatonin for sleeping at night. Would you tell me what over-the-counter medication you took that you think caused yours. This is really scary in a child.
I am so sorry about your granddaughter. I can’t even imagine what it must be like to see a child or grandchild suffering. I did not take any over-the-counter medication’s that I think contributed to my Dystonia. Except for NyQuil which I took probably too often for sleep. The main medication I took was for seizures called Dilantin, which is one of many medications that our thought to possibly contribute to the onset of Dystonia. I don’t think that mine was caused by this medication. I think it may have been one of the reasons.
That’s interesting you say this I believe medications are largely responsible for my dystonia symptoms I am still
In the process of waiting to
Get evaluated again and diagnosed as my symptoms have continued to progress sadly. I came off of a few medications at different times within the last 2 years . And believe it or not the slightest amount of taking a medication to help alleviate some of my symptoms mainly tremors and anxiety/ptsd I took ( LDN ) 0.1.mg for 2 days was enough to get my head to start contorting and pulling to one side I suspected Dystonia for months as stiffness and other symptoms were there but it wasn’t until that tiny amount unlocked that beast so to speak , what it told me was my body had developed a sensitivity to medications of sorts besides that tiny amount of LDN I took for 2 days I haven’t taken any meds for 6 months and that time frame was when my symptoms quickly started and rapidly became apparent . I hope
Tom can see this message and have a better idea of what I may be experiencing I greatly have been seeing his videos and trust his opinion 🙏
Hi Tom,
Thank you so much for posting!! When I first developed cervical dystonia, I went to my PCP, and told her I had severe pain in my head- told her it felt like my head was in vice grips and the pressure just wouldn’t go away.
Long story short, as symptoms got worse I lost a great job due to loss of productivity (the doctors should’ve listened to me and put me on short term and then long term disability while they figured out what the problem was); however, my PCP didn’t even write it in her notes when I first complained about the pain.
I’ve tried Botox and I’m not responding to the treatment.
Do they need to do an EMG to find out exactly which muscles are contracting?
FYI- I’m in severe pain every day and it just doesn’t stop. My head isn’t locked, but as you described, I’m finding it very hard to do simple tasks- such as change light bulbs without breaking them, fold paper in straight lines, etc.
Thank you!
I am almost exactly like Tom. He's the best informed patient I've seen. Excellent work. He understands the disorder and dealing with it.
That is really nice of you to say. Thank you very much!
Ive been ill with this condition for a few years and found this really helpful. You are very right about the effect it has on relationships. I moved back in with my parents when I could no longer keep food in my fridge but have gotten so much worse from the stress. Im not sure what the next step is but with 6 months of hard work my body is starting to straighten out! I see lots of reasons to be hopeful so whatever I have to do to keep the progress going is happening 😊
I thank you for sharing your experiences in such a real way. You have a real gift for talking about the very real challenges of having dystonia without sounding like a victim and it’s really inspiring!
Thank you so much for your message! It was very kind of you. Much of what you shared sounds very familiar to things I have been through. Please don't give up hope because even though you are not sure what the next step is, you will find it. Just keep taking good care of yourself and get as well as you can, and the answers will come. If I can ever be of help, please reach out anytime!
@@TomSeamanCoaching I’ll be around!
please tell me how did you recover?
@@SashaKaktus-eo5sp neuro plasticity! I got so frustrated I decided I would rebuild my body nerve by nerve. Focused effort on the upper cervical spine and TMJ. It was not fun or easy and definitely looked like I was getting worse at times. Learning to move without reacting to the dystonia, that is your goal. Where things hurt the most... you gotta learn a new way to move it so you can forget the dystonia.
I’m just reflecting on my day, how different it was than a year ago. It’s been worth every bit of effort. I did notice my recovery sped up at least 10x after doing psychedelic therapy. Meditation has been even more useful. Would highly recommend looking up some of Joe Dispensa’s videos on healing with the mind. I only found his crazy content after I was healing the same way. Coulda saved me many months had I found his stuff sooner.
Also look up Dr Farias on here. He has successfully treated many cases of dystonia. It’s very encouraging to see people actually can get better. YJ Care Clinic is another great resource. Miracle workers over in Korea that have helped soo many people.
I think if you take a look at how simple Dr Farias and the Korean doctors treatments are, you will be able to see a path to healing for yourself. A custom mouth guard/appliance for the jaw by a dentist and chiropractic treatment of the cervical spine may speed things along. I’m doing great without either. It really is as simple as learning new ways to move! Getting your brain to try is the only tricky part. Definitely reach out if you feel lost.
I have cervical dystonia and on hand what is the real treatment? I suffer from 15 years
I've had laryngeal dystonia for many years, over the past year I've had signs of cervical dystonia but over the last few weeks it got much worse, now I'm nearly always postured identically to how you looked in your pictures, and the pain is unbelievable. Thanks for posting this video, it makes me feel less alone if anything.
I am so sorry that you are now having to deal with cervical dystonia on top of laryngeal dystonia! I hope you can get some effective treatments for both. Please let me know if I can ever be of help. It is a lonely condition, but you are not alone...
Thanks, Tom! I’ve been anxiously awaiting this video. My big takeaway is that it has inspired me to reread your book Diagnosis Dystonia Navigating the Journey. It seems like I need constant reminders of the things I can do to manage my Dystonia, especially taking time out of my day for me. Thank you for your hard work helping others. I for sure will contact you when I’m ready for more questions. Your video helped answer some of them!
Thanks for your message. I appreciate it and am glad to hear some of your questions were answered in the video, but feel free to contact me anytime for more!
Thank you Tom for sharing all of the hard work and research you share with us. Gary
I appreciate that Gary. Thank you
Thank you for your help. You give me hope for my daughter problem. I preciate your excellent work.
I’m really glad to hear that this has been helpful for you and your daughter. Wishing you both the very best!
This is such a comprehensive, excellent information for this debilitating issue. One of my dear friends has this condition which has in his case affected his speech. You speak very fluently. At least you can express yourself.
Thank you for your help.
Thank you. I really appreciate that very much! I am very sorry about your friend. It sounds like he has dysphonia? That is a form of dystonia that affects the vocal cords. I hope he is able to find some helpful treatments.
@Tom thank you for sharing your wisom and experiences with Cervical Dystonia! I have your book and so appreciate hoe thorough it is. I have been navigating cervical dystonia for 7 years and have learned so much over the years. So grateful for you and all those who have gone before us and all the research that is being done now to help those navigating dystonia! In gratitude 🙏🏽
Thank you very much for such a kind message! I appreciate it so much when I hear how the book and other things are of help. This is such a tough condition to live with, so to know I make a difference means a lot. Please reach out anytime if I can ever help in any way.
MANY THANKS TOM. BEST WISHES, PENNY
Wish you all the best. Great idea to do a video to help others and to educate the public at large.
Thank you! There is not enough information out there so the more we can share the more people we can hopefully help.
I’m so glad I recently found your channel - I’ll be watching them all - thank you 🙏🏻
I appreciate that very much. Thank you!
Hi Tom. I have cervical dystonia. I want to know, what kind of pillow I should use. Thanks
Hi Sonya. That's a good question and one I wish I could answer, but pillows are a very individual thing. For me, I like down feather pillows because they are easy to mold into the shape I want them to be for my head and neck. Experiment and use what feels right to you. There is not right or wrong one to use. Good luck!
Great job Tom I forwarded your video to my Physiotherapist she is a great heip, she appreciates your info. thanks Tom
Thanks very much and thank you for sharing it with your Physio!
Thanks Tom!
This information gives me renewed hope. Today in an email with my doctor she referred to my case as "only focal dystonia ". Then proceeded to tell me my hands not working together wasn't because of my dystonia . So nice to think I have to explain this one to. I have 3 Autoimmune disorders that are ONLY autoimmune . Fun in a post covid world
I'm really happy to hear that this was helpful for you and gave you some renewed hope. But at the same time, I'm really sorry that you are dealing with doctors who are so ignorant and thoughtless. This is one of the reasons I try and write as many articles as I can and do as many videos as I can and put as much information out there so that hopefully we can become as educated as possible and hopefully the doctors are also paying attention and we can get more awareness to them to understand better what it is that we go through and that they need to be more compassionate and understanding of our unique needs. All best wishes to you!
@TomSeamanCoaching I will be meeting on Monday with my primary doctor, and I'll be referring her to your books. She is eager to learn more going forward. Some of the problems I believe are down played by neurologists and the primary take their words. I'm just grateful I'm here and can help. My journey started about 30 years ago. Doctors had a tough time, but I stayed persistent . You just need one for who listen I've found one I believe
@@karlaolsonmendell8459 that’s great that you have somebody on your side who is eager to learn more. I have a PA just like that. Even though she says she doesn’t do much to help me, I always remind her that she is always looking for different ideas and possible solutions, while at the same time listening to my perspective and what I think we might want to try. Having someone as a teammate is worth gold to me. I’m glad you have somebody in your corner like that as well.
I've come from hoof trimming to pimple popping, now I'm here! I should've come here first. Thanks for the info.
You're welcome. I hope you find some helpful approaches to managing your symptoms. There are a lot of things out there. Unfortunately we often have to sometimes go through a lot to find what is best for us, including a lot of people with no clue what we have or how how to help. Best wishes!
Many thanks for your very helpful video, I have Parkinsons as well as cervical Dystonia and spinal stenosis so having a much better understanding of Dystonia is really useful. Thanks again
You're welcome. I hate that you have to experience all of those things, but happy to hear that this was helpful. All best wishes!
Thank uou for sharing your knowledge and experience. After struggling with pain for two years, I was finally diagnosed with dystonia. I had never heard of this. The pain made my life uterlh miserable.. First botox injection has helped myself pain, and I might need tweeking. I will try other things you have suggested in you video.
I'm very sorry to hear about your diagnosis and I hope that you are able to find some helpful treatments. There are many different things out there so please consider both allopathic and non allopathic methods.
Thank you, Tom.
Liked this very much!!!
Thank you!
hola me gusto el video x que me a ensenado mucho yo tengo un hijo con distonia general.
Thank you. I'm glad it was helpful. I'm sorry about your son. I hope he is getting helpful treatments.
Hello Tom, 3 questions please. My wife has cervical dystonia.
Have you ever tried fasting for any relief ?
Have you heard about Autophagy? Do you think it may help ?
Have you tried a keto or a carnivore diet and would they help?
I’m sorry to hear about your wife. I have tried fasting using Prolon (which promotes autophagy) and did not see any difference in my symptoms. However, I do know some people that have done different fasts, as well as cleanses, and have found them helpful. I have not tried keto or carnivore diets, but that could possibly be beneficial. Any type of anti-inflammatory diet could be of help. Everyone is very different so how we respond is going to be different. I find that eating certain foods and avoiding certain foods to be helpful with managing my symptoms. It’s one piece of many pieces to the puzzle for me, but there are some outliers that will have profound benefit from dietary changes.
Thanks Tom, I have had dystonia with spasms in my neck since 2001 and have been in pain since, have tried everything since then and am still looking for a cure.
Please don't give up your search for something that will help. I know how frustrating it can be, especially after so many years, but we never know what might be around the corner
@@TomSeamanCoaching Thanks Tom,
Excellent presentation. Thank you 😊
Thank you very much Denise!
Can i know the title of books .I have been suffering from cervical Dystonia for last. 14. Years,
The titles are Diagnosis Dystonia: Navigating the Journey and the other book is Beyond Pain and Suffering: Adapting to Adversity and Life Challenges. They are on Amazon and also my website that has a lot of other info that might be of help- www.TomSeaman.com
4th means of dystonia etiology: cranial palsies (usually cause strabismus: IV primarily, and VI. Also III.
I was diagnosed with CD
I can turn to the right and look up but it takes a huge effort and it is painful.
NO movement at all.
If I stand still i can get my head straight. But once i move and look down my head sticks to the left.
I am going for botox soon. I am not as bd as some people are. But is still restricting my day to day life.
Driving is difficult
I feel like i have ksised my previous life goodbye
Luckily I am not young. Kids grown up. Done lots of fishing/camping with them. I hope to do it again one day...
I have both cervical dystopia and meige syndrome and am wondering if you have any advice regarding the meige syndrome which for-me is very challenging.
Meige syndrome can be very challenging to treat. As I’m sure you know, it is most commonly treated with botulinum neurotoxin therapy, but some people have also done well with other forms of treatment that utilize exercise and neuro rehabilitation.
@@tomseaman5543 yes I have been having Botox injection for around 11 years first for cervical and the meige syndrome the last 5 years. Not sure what the Nuro stimulation is. I live in a smaller centre with not a lot of resources, is this something I could do remotely?
Can be a comorbidity for those with EDS type three
Yes. I know a few people who have both
How i know if involuntary movements on neck Casused by functional neurological disorder or cervical dystonia?
That’s a good question and one that I am not be able to answer unfortunately. That would be something that your neurologist would have to determine.
Very good explanation, thanks so much from India at Tamil Nadu
Thank you. I appreciate hearing that this was helpful
Mine went into full remission for six years and it just came back this summer … I am desperate for it to “shut up” again … I hate it. The pain is immeasurable and it’s so embarrassing
I am so sorry to hear that!!! I bet those years in remission felt amazing. The pain is beyond words. Do you know how or why you were able to go into remission and what triggered the onset of symptoms again? Are the symptoms the same as before?
@@TomSeamanCoaching yes. I did several really high doses of psilocybin.. this summer was brought in by a suicide done in front of me at a bar, followed by a drowning at a park I witnessed .. and an affair that shook my whole world up . Lots and lots of CNS overload. I’m getting myself back to the best I can .. I do TONS of research on what makes the basal ganglia even function and what areas do what .. I only have tremors mainly when I lay down now so I have to fight my body to go to sleep. It’s just such a wild disorder
@@ChalcedonyKid79 Wow! Just one of those things is a lot to go through!! I am very sorry. It's amazing how trauma and the CNS are so connected. I hope you can find your way back to remission again. I have the same problem when I lie down. Not tremors so much as hard pulling down and to the right. It happens when any there is any pressure on my head or neck even if standing or sitting. Sleeping is brutal for me as well. Wild disorder.... understatement..lol
@ or sometimes focusing on my phone much makes them go WILD. It what it is. We just float on, don’t we.
@@ChalcedonyKid79 I think that's all we can do :)
Hi Tom,
Did dr Farias programme not help? I am not getting much help from it.
I never did the Farias program. I did/do the ST Clinic program. Both take a lot of time, patience, and dedication on a daily basis, without overdoing it. The dystonic body is very sensitive and it doesn't take much for things to improve or take a turn for the worse.
My Dr is recommending DBS surgery. I’m really not wanting to do that. Once it’s done there’s no going back. What’s your opinion?
For me that is a last resort if nothing else helped, but it is an individual decision, It isn't necessarily reversible, but if it doesn't work they can remove the hardware.
@@TomSeamanCoaching. Thank you for your reply
Any thoughts on the deep brain sonic ultrasound therapy?
Seems promising
It definitely seems promising. I don't know of too many people who have had it done in comparison to those who DBS surgery. I think it is still in its infancy which is why I haven't heard much about it. It seems less invasive, but it is not reversible like DBS.
I have been receiving botox treatment for 10 years and swimming for 5 years. For the last year, my throat has started to get tight again due to the noise of my neighbors, I cannot sleep at all, I started to feel bad again due to stress. Even though I have Botox every 3 months, the effect lasts for 2 months. I'm researching torticollis surgery. I started having pain in the area where my spine was more crooked. My voice, like yours, always sounds tense and hoarse. I am a rap music singer, I cannot sing comfortably, I feel bad. Can surgery fix my voice? There are songs on my channel.
It's possible you might be experiencing spasmodic dysphonia, for which Botox very helpful for a lot of people. There is a new botulinum neurotoxin on the market now that is faster acting and longer lasting. Is called Daxxify. You might want to consider this with your doctor.
i have generlized and spazmice dystoniawith a bacolfin pump had dystonia 50 yearsyou can take 120 mg of bacolfin before the pump
I hope that has been helping
Hey tom..
Does your movements stop when you sleep at night .
As far as I know they do most of the time, but there have been times I have woken up and had spasms
Have any experience using essential oils topically or internally? I’ve read a testimonial using copaiba and frankincense internally.
I have tried a few of the doTerra oils, but not too much relief. I use some hemp based topical lotions I prefer, this one being my favorite- www.tomseamancoaching.com/neuro-soothe-pain-relieving-lotion-product-review/ I am not familiar with taking them orally. I would like to learn more about that
@@TomSeamanCoaching I am a doterra wellness advocate I have used their oils topically and orally. Orally just in the last couple years. I use the neuro symphony of cell routine on a lady friend who is close to 80 years old that has Dystonia. I found your video and just wondered if you had any experience. Thank you for replying.
Note: oils taken internally you have to make sure they are tested and therapeutic grade that is why I use doterra.
@@ninasadowski393 thank you for sharing that with me. I had nominal results with some of the topical oils. How is that woman you mentioned responding to them?
Hey , could you tell me the initial symptoms you had when your dystonia was starting? I have neck pain when im working on my computer, doctors tell me it might be dystonia
I had slight restricted mobility turning to my left with a very slight head tilt to the right. That lasted for about a month and then increased in severity over the next several months. Pain started about three months after initial restricted movement and by eight months it was like you see in the very first slide with my head twisted with pain beyond words due to the severe muscle contractions in my neck
I think this may be developing in my nine-year-old granddaughter. She turns her head and opens her mouth in a weird position. Is there anyway to nip this in the bud?
Unfortunately for most, unless it is only a dystonic reaction, this is not something that has a quick fix or cure.
I have had cervical dystonia for bout 4 years now. And it is horrific.
I am very sorry, I agree. It is brutal. I hope you are getting some help from your doctors.
@@TomSeamanCoaching i have been getting botox injections for the past four years. But as of late I think thier effectiveness has started to wear off. I am up to my third type of shot now. i have also been on gabapenten for several years. Several months ago for the first time my local pain clinic did a nerve ablation on the back of my neck. While that did not get rid of the spasms I think it did make them allot less painful. It seemed like it made it allot easier to turn my head to the left. Several of my friends said they noticed a very definite improvement right after I had it done. But i have only had it done once. And that is really itself a very brutal procedure! But I am willing to do that every 5 or 6 months for the rest of my life if I have to to get some relief from this! But I think its starting to wear off at the moment. I am planning on going back again to get it done. But I just woke up one day bout four years ago and literally overnight it was just there. No joke just like that! But my spasms are to the right. I am now 52.
I’m glad to hear the ablation helped a little bit. A friend of mine is getting that done next week. Botox was never of helped to me and I’ve never tried to ablation but it is something I would consider if it came to that.
Thanks. Yes the ablation did help enough so far that I am willing to get it done again. I am sure some of what I watched in your video might help also. One way or the other come heck or high water I will find a way to overcome this disorder!!
Hello sir,my mother complained about her head being slightly tilted to right for a month,we checked up her by a nurophysician,he diagnosed my mom with cervical dystonia and prescribed some oral meds like Levodopa-carbidopa,lacomaside etc and within taking 2 doses she is already feeling much better,i just wanted to ask, will this remission be long lasting or will her symptoms get worse god forbid, please reply
I am very happy to hear that your mom is responding well to levodopa. Regarding her symptoms going forward, I can’t answer that. I don’t know if anyone would really be able to because it all depends on how well she continues to respond to the benefits of the medication and her dystonia, which is very unique to every individual that has it. There is no cookie-cutter answer for anyone unfortunately. Hopefully her symptoms will not return, but if they do, there are other options that can also help.
@@tomseaman5543 thanks so much for such an optimistic response -- one more question,is Levodopa good for long-term use?
Just a kind FYI: it’s spelled cerebral, and said, phonetically as “sur-ree-brawl”. Sar-a-brull” is not a word. I am in no way trying to be mean nor trying to insult you. I come from pure kindness and respect 🌹
Thank you very much. I don't even remember saying that word in this video or how I pronounced it…lol. I had a roommate with CP for several years and he and his family would pronounce it in the variety of different ways. I almost always pronounce it the way you said but when making videos with so many words sometimes they come out differently than intended. Thanks again and no offense taken whatsoever 😊
I recently visited hospital, due to involuntary nervous movement, eye, leg & neck movement with stiffness, I was told I hv this said dystonia, hv been following medications very well it seem the symptoms hv still increasingly continue, what can do about it, bcos it comes some pain as well.
I am very sorry this is happening to you. If you are not already seeing a movement disorder neurologist, that would be my first step to make sure of an accurate diagnosis of dystonia or something else. I hope you can find some answers to your symptoms
eu também tenho essa doença, estou procurando tratamento.
I'm sorry you also have dystonia. I hope you find some helpful treatments
Hi , thanks you so much I had had it over 4 years 😞very much like you…😢 What about prolotherapy Dr. Hauser talks about in Caring Medical from Florida? My neck moves right when Walk….. I can’t handle it more ❤
I'm very sorry you have it so severe also. Like any therapy or treatment, prolotherapy might be helpful. If it feels like a good fit for you I think it is worth trying.
Thank you so much!!❤❤❤
@@nestanrasmussen1863 You're welcome and best wishes
@@nestanrasmussen1863 You're welcome and best wishes
Is there no cure permanent cure
Which oral medicine helps u the most?
Different medications have helped over the years. I have used Klonopin, Valium, and baclofen, but there are many others that are potentially helpful for people as well.
What was your routine for klonopin & baclofin, please
Hello sir. I am taking botox with some otal medicine and that helps me a lot but my posture is not still getting proper straight please share some tips how to correct my neck posture.
Do I need to see MDS to get dianosis of Dystonia?
Anyone can diagnose Dystonia, but typically a movement disorder specialist is most effective for most people treating it
I have ben suffering cervical dystonia 4 years.botox,, medicine no work
I am sorry to hear that. I never did well with those things either. Have you tried any of the alternative treatments I mention in the video? If you don't have my book, that might be of help also - www.diagnosisdystonia.com
Are you cured?
Not at all. Still many symptoms. Just not as severe as they once were
@@tomseaman5543 but I’ve seen you on TV looking fine? Sorry, if this sounds ignorant.
@@tomseaman5543hey Tom, what is your opinion on TBIs and movement disorders.
Just a kind FYI: it’s spelled cerebral, and said, phonetically as “sur-ree-brawl”. Sar-a-brull” is not a word. I am in no way trying to be mean nor trying to insult you. I come from pure kindness and respect 🌹Also, I am grateful for your videos and the respect the time you spend educating others 🌹
We can call it tortocollis or wry neck I have this problem since I born It annoy me
There are lots of different names, some of which have been outdated but they all mean the same thing. Torticollis, wry neck , cervical Dystonia, spasmodic torticollis, etc. They all mean the same thing for the most part.
Ini yang saya alami sekarang.ditambah kepala gerak2 ke kanan😢
I think it's 💯 percent 🤔 genetic
0:54
Excelente! Eu optei em fazer tratamento alternativo.
Acupuntura p dor
Yoga para relaxamento
Tai chi
Técnicas de respiração para ansiedade
Método Self Healing ( Meir Schneider )
Aparelho para dentes ( biocibernetica bucal do Hamilton Ramires em São Paulo - Brasil)
I hope those treatments have helped you. I have also done most of them with success.