Відео

Mine is idiopathic. That's great you have so much improvement. I would agree that not using tobacco will be helpful. I find any type of stimulant to be a trigger.

⁠@@TomSeamanCoaching i went From having involutary movements on leg, tongue and torso to still have these contractions on back, throat and chest as you described in the video. I really hope I can reach complete remmision as it showed rapid improvement within months . Do you still have symptoms without taking any stimulants? Also do you avoid sodas because of the caffeine content? Thank you again for your advice

@@dani5639 Yes, I still have symptoms. My body is compromised in a variety of different ways that are too detailed to go into here. My books are a better reference. I avoid soda not just because of the sugar/caffeine, but because they offer no health benefit. I eat as clean as possible.

@@TomSeamanCoaching ok thank you for your advice. I am from greece . If you ship to europe let me know.

@@dani5639 Yes, I ship book to Europe, but shipping costs would be less expensive through Amazon. International shipping is costly

Head trauma is often a cause for dystonia. Have you gotten any advice from a doctor as of yet? If you suspect it is dystonia, please see a neurologist that specialized in movement disorders.

Thank you very much for the kind words about the video. I really appreciate it. I'm sorry that you are experiencing symptoms that are at the moment undiagnosed. What you described could most definitely be dystonia. It manifests in so many different ways and there are many people who don't look symptomatic that are experiencing extensive muscle contractions and tension, as well as pain. Then there are those individuals that are highly symptomatic visually, but don't actually feel the muscle tension or pain. And also you can mix and match those two descriptions and even add in a couple of more variations. There are different body positions that I will get in where I look totally normal and then other positions where I have severe symptoms (but I always feel the muscle tension and contraction even if it's not visible). Below is a link to another video and around the 45 second mark you can see symptoms how I look when I am lying down. However, if I were to sit upright or stand up, you probably you would not notice these symptoms because they are triggered when something touches the back of my head or neck. That all being said, dystonia is highly variable so I would definitely discuss this as your possibility with your GP. You may also want to look into stiff person syndrome. There are several different conditions that have similar symptoms that overlap each other. ua-cam.com/video/PeNo4ff4mEo/v-deo.html

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.

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.

Thank you Erika!

I think it's a combination of things. When I was 9, I had two traumatic brain injuries within six months of each other. I had 3 or 4 idiopathic grand mal seizures between the ages of 19 and 23. I was also placed on an anti seizure medication during that period of time. It's a medication called dilantin that some people say could be one of the meds that are a contributing factor to the onset of movement disorders. A month prior to my first symptoms which were quite mild initially, I had a bike fall. I didn't injure myself in any way but it was a jolt to my system. During that same period of time, I was transitioning from working going back to school for my masters degree, so it was a very stressful period. I think a combination of these things may have played a part but I don't have any direct cause effect relationship that I can pinpoint.

@@TomSeamanCoaching fair enough, prior to my BIG TBI in June 2023, I had a long history of head injuries. There’s no doubt in my mind it’s played a role in my persistent symptoms for over a year now.

@@headtrips1 I wouldn't be surprised if there was a connection. I know lots of people with head trauma at different times of their life who developed dystonia/tremors

@@TomSeamanCoaching have you heard of people who get relief/improvement from SSRIs? I’ve talked to two people who had blepharospasm and got relief from antidepressant meds? I’m curious, if that were true, if theres was a more psychogenic type of movement disorder like FND-related?

@@headtrips1 In most cases, I hear of people who get worse with anti-depressants. They are known to either cause or worsen dystonia symptoms. This is not universal, but something to keep in mind. FND is a confusing diagnosis and I am not sure of anti-depressants in those cases act on the body differently than non FND situations.

Thank you for your questions and I will do the best I can to answer them. Most of it is above my level of education and knowledge unfortunately. One of my thoughts for your son, and I may be totally off the mark here, is a form of cerebral palsy perhaps? Has that ever come up? There is a form of dystonia that affects the jaw. It is called oromandibular dystonia. Also, it is possible to have adjacent parts of the body affected at the same time which is called segmental dystonia. So that is a possible classification for the shoulder and jaw, although i don't hear that very often. Dystonia can impact any part of the body so it most definitely could impact the wrist and hands. However, dystonia is not typically known as a progressive disorder so to assume that it might progress is not necessarily accurate. Unfortunately, I do not know much about Wilson's disease. However, metal toxicity has been known to cause bizarre neurological problems that might include dystonia. This is where there might be a Wilson’s link to dystonia, but i don't know enough about this to say much. I just know that there are some people who have had various heavy metal toxicities that developed various movement disorders and other neurological conditions. I'm sorry I wasn't able to answer things as detailed as I would like. It just goes above my level of knowledge. I hope you are able to find some answers and relief for both you and your son.

Can you be a little bit more specific regarding myoclonus?

@@TomSeamanCoaching is it a form of dystonia? And have you heard of this new emerging “functional dystonia” as a result of functional neurological disorder (conversion disorder) v true Dystonia?

@@headtrips1 There is a form of dystonia called myoclonus dystonia. Also, some people have symptoms of myoclonus that accompany other forms of dystonia or symptoms of dystonia. It gets kind of confusing. More confusing is functional neurological disorder. It is a real thing that does impact many people, but it is a diagnosis/condition that is hard to explain and understand. I have been to functional neurological support group meetings and online support groups and even people with functional disorders have a difficult time explaining it. Conversion disorder was the old name for functional neurological disorder.

@@TomSeamanCoaching have you seen that people with FND can also not look symptomatic at all, similar to true dystonia patients?

@@headtrips1 Yes, the symptoms are often very similar, but unlike a focal dystonia like cervical dystonia, for example, with FND you might see more issues with walking (gait), tremors (often in the hands), and tics similar to myoclonus.

That's a really good question. Although dystonia is not considered a progressive disorder like Parkinson's or ALS, for example, some people do get worse overtime period but that is not the rule. That's more of the exception. That being said, we don't really have very good statistics surrounding dystonia and all of the different manifestations so it's very hard to say for sure. Anecdotally, based on 20 plus years having it myself and working within the dystonia community, I have not seen a trend that most people get worse.

Thank you very much! I really appreciate it. For me, I consider DBS to be a last option. For others, I know it to be a first or second option, which I think is great if that is the route they want to go.. I know many people that have had it done with great success and some people that have had it done where it had complications. But the majority of people I now have had great success. For me, I wanted to try everything I could before considering surgery. It’s a personal preference. For me it’s a last resort, whereas for others it may not be and I think everyone should do what feels right to them. If I ever do say that it should be last resort for everyone then I need to make sure I clarify that going forward. Thanks for pointing that out..

Thank you very much for sharing everything you did. I don't think it was too much information. I think the more information the better. I don't really have flare ups so it's hard for me to answer your question. Also, I have cervical dystonia and not generalized so I would imagine that what I would consider a flare would be different for you than it would be for me. However, that being said, I would suggest everything that you are already doing. In addition perhaps utilizing trigger point tools, ice along with heat, meditation, progressive muscle relaxation, decompression type things like removing yourself from highly stimulating environments. I think the way that you're living your life overall is the best way to manage your symptoms and perhaps even reduce the flare ups or reduce the severity of flare ups. I had four grandma seizures back in my late teens and early 20s. I know many people that have been told that they have non epileptic seizures when it is more often than not a really bad day and really bad flare up, because they do mimic those tonic/clonic seizures that most people are familiar with versus dystonia. I'm sorry I don't have much more to offer because I think you are doing everything that I would think of. Especially medicating yourself when absolutely necessary when you are having a flare. I'm curious comedy have you ever tried Benadryl when you feel a dystonic storm coming on? That is something I have heard many people with generalized dystonia utilizing to try and offset the severity.

That couldn’t be more wrong. You might want to look at my story in a bit more detail and you’ll see how bad it was

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

That is really nice of you to say. Thank you very much!

I am very sorry nothing has been of help. I can relate to the conventional approach not helping much. Please check out this video that has various traditional and non-traditional approaches to treating symptoms- ua-cam.com/video/PzAefKeQiKQ/v-deo.html

@@TomSeamanCoachingthanks brother Tom! I will watch all your videos so that i’ll be having a clue how to cope and be improve my health issue and overcome this darkness side of my life! You are very inspiring hope I could apply to myself. Thank you for sharing a positive and helping sick people like me much appreciated

@@ernestojun2 Thank you. I hope the other videos are helpful. Feel free to ask any questions anytime and I will do the best I can to help

I am really sorry to hear this. Have you tried anything besides Botox?

@@TomSeamanCoaching Thank you so much for replying to me- much appreciated!! My wife forwarded me your video you made about swimming and cervical dystonia- I really need to try it! As far as treatments, they did X-rays/MRIs of my neck and brain to rule out all kinds of other issues BEFORE I was finally referred to a neurologist who instantly diagnosed it as cervical dystonia. Fortunately, my neck movement isn’t nearly as bad as yours was/is, at least not yet, but I wake up every day in SEVERE pain and it lessens a little as I perform physical activities. I’ve worked in the biotech industry in R&D for 25 years, but since 2021, my productivity has suffered tremendously (as I previously mentioned). I was fortunate to find a job where I receive hardly any benefits, but it’s better than complete disability; however, I don’t know how long they’re going to keep me because I have so many medical appointments. I have tried physical therapy- twice. Once it was for “unexplained head pain” and a second for cervical dystonia; however the place I visited didn’t provide any help. The pain is just disabling/complete exhaustion everyday, but neurologist and doctors just don’t seem to care; however I am on high doses of diazepam and baclofen, and supplement that with tizanidine, 800 mg ibuprofen and 600 mg Gabapentin. This coming Monday, April 15, my neurologist is going to do an EMG to find out exactly which muscles are giving me the most issues. It started out as just head pain- I couldn’t feel it in my neck. Over time, I could feel it in my neck, shoulders, back and arms. I weighed 205 pounds when I first felt it come on. I now weigh 184 and just feel like my upper body is deteriorating, but don’t know what to do to help it- which goes back to swimming! Any suggestions? May I ask what part of the United States you live? Getting into a top ranked neurologist is over a year’s wait where I live (Sf Louis MO area). Thanks again!

@@TomSeamanCoaching Hi Tom, I added a reply shortly after your question but for some reason UA-cam didn’t add it, so posting again! Yes, I have tried physical therapy 2x, a couple of years apart, but only one was written specifically for cervical dystonia. Unfortunately the therapist wasn’t familiar with cervical dystonia and it aggravated it more than helped me. I’ve yet to try swimming as you recommended in a video in which my wife found and forwarded me your information (the way I found you!). I think that will help the best- I’m really having balance problems right now and it’s making it difficult to work- I have to walk extremely slowly or I’ll lose my balance. I’m driving, working 8:30-5, and also reffing soccer games on the side for extra money; however, I’m losing a lot of muscle mass quickly!

@@chriso5193 Unfortunately, most PTs do not know how to treat dystonia. You sound very active and might do well with a more movement based approach, so check out these places www.stclinic.com, www.fariastechnique.com, and www.beyondrehab.health

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

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'm sorry about your symptoms with no doctors being of much help. That is unfortunately the case with movement disorders like you are experiencing. Ideally, it would be good to see a neurologist who specialized in movement disorders, but is not necessary for a diagnosis or treatment. Some people believe that the only people who can help us are Movement Disorder Specialists, but other doctors and approaches are also helpful. At this point for you, it sounds like you need a diagnosis. Who to see and what approach to take would be the next step. This video on dystonia treatments will help you see what options are available- ua-cam.com/video/PzAefKeQiKQ/v-deo.htmlsi=nmNkkInEEElV9v9Z

Thank you

Do you have any particular topics you would like to see covered? Thanks

I am so glad this was helpful and so grateful for your comments! Thank you!

Unfortunately for most, unless it is only a dystonic reaction, this is not something that has a quick fix or cure.

Anyone can diagnose Dystonia, but typically a movement disorder specialist is most effective for most people treating it

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!!

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.

Yes. Many people can. It depends on the severity of your symptoms

Thankq for reply

What you have could be Dystonia even if you don’t feel like your opposing muscles are contracting. Dystonia manifests and feels differently in everyone. Ideally, it would probably be best to go to a movement disorder specialist neurologist and they would best be able to determine what it is that you have. I’m sorry you’re going through this. It’s a difficult condition to diagnose and I hope that you get the correct diagnosis with appropriate treatments very soon.

Unfortunately we have limited options and many doctors are not willing to explore other alternatives

Yes. there are many- Please see my book Diagnosis Dystonia: Navigating the Journey as well as my video called Dystonia Treatments and Therapies.

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.

I'm so sorry. I've had it for the same length of time and it is exhausting

I glad you found out what has been going on, but really sorry you have to deal with this also, especially at the severity level you are. I hope you can find some helpful treatments and start to put the pieces back together. I know how hard that can be so let me know if I can be of any help

Typically a neurologist who specializes in movement disorders is able to make an accurate diagnosis. There are no tests for Dystonia so it usually is by observation from a specialist