What is Dystonia and What Does it Feel Like?
ฝัง
- เผยแพร่เมื่อ 10 มิ.ย. 2015
- Tom Seaman, author of the books, Diagnosis Dystonia: Navigating the Journey and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges, explores what dystonia is and how it feels to help better explain what we experience on a daily basis.
To learn more, please visit: www.tomseamancoaching.com/ or www.diagnosisdystonia.com/
Diagnosis Dystonia, by Tom Seaman, takes you on an educational journey full of valuable information for those newly diagnosed, as well as those who have been living with dystonia for years. Tom’s journey is both inspirational and motivating, but this book is much more than a personal story. It is a comprehensive resource for anyone living with dystonia or knows someone with dystonia. Serving as a road map, it covers well referenced topics from the diagnosis onward, such as grief, fear, anxiety, depression, isolation, pain and pain management, doctor visits, relationships, skills for daily living (mental and physical), treatment options, anxiety, stress and stress management, coping skills, and much more. Much of information transcends dystonia, applicable to any health condition or other life challenge.
Share this video at:
• What is Dystonia and W...
#selfcare #chronicpain #chronicillness #health #fitness #lifestyle #depression #anxiety #dystonia #hope #nevergiveup #wellness #nutrition #mindfulness
I was diagnosed with dystonia when I was 13 years old. I am now 16 and it's very noticeably worse to where I have very little control of the way my head is positioned and the way my eyes and my face move. My hands twist to the side and my heads moves a lot. I've had a lot of people stare and just really question and judge me for it. My neurologist says I'll eventually not be able to walk even because my dystonia is progressing abnormally fast. He said I'll be immobile by the time I am about 21. But I'm researching constantly because all the meds I've tried have not worked so I'm doing as much as possible because I'm not giving up. Gob bless ❤
Thank you for your comment and I am so sorry to hear you are going through this. I am not a doctor, but I would not listen to the outcome your doctor has given you. Dystonia is not progressive the way he describes. There are many options for you. Please get a copy of my book Diagnosis Dystonia: Navigating the Journey. It provides more information than a doctor could ever give you. On a personal note, my cervical dystonia symptoms were very mild and then very severe for many years, and then much beter again. Please check out the photos on this page of my website. www.tomseamancoaching.com/about-tom/
I hope things will workout for you, and remember not to give up 💙 stay strong
Hi. Please document your story because I would like to follow. My son is 22 months old pending diagnosis.
Thank you
@@myluxury1st document? I am currently 17 and I am still affected by dystonia but definitely not to the point where it prevent me from doing things. My body shakes sometimes, but not dramatically. It's more of twitches and funny postures for me. Such as tilting my head a certain way or twisting my wrists. Those are some of my tremors. Dystonia differs from person to person but it's pretty rare that it's severe, especially in someone as young as your son. Medication definitely helps whenever he is able to start. ❤️
@@hermosa3577 Thank you for giving me more insight and sharing with me.
This is actually how explain Dystonia, and most people can't wrap their mind around it. and then I love it when people are like I Google searched Dystonia and it's not that bad. I wish people like that could experience that extremely pain and suffering, the exhaustion you experience from your body fighting it's self 24/7.
I agree. It's very hard to get others to understand. I have used these examples and most people can get a sense of it, but there is no way they can ever really appreciate the extent to which it feels and impacts our lives. I keep trying to find new ways to explain it in the hopes that something sticks with them.
Even harder to let people know this can be fixed.. We would like to talk to you about helping heal your followers. Do not fall for the lies of mainstream medicine saying its incurable, because nothing is incurable and nobody deserves to suffer.
What did you have in mind?
I have it and it feels like I'm being ripped apart. There are times when the pain is bad I have to take meds to knock me out. I've never felt so much pain as when a dystonic storm hits. I've had 2 c-sections and 2 knee surgeries and those are nothing compared to the pain of dystonia.
Being ripped apart is another great way to describe it. It is so hard to fathom pain like this unless one experiences it. I don't wish it on anyone. I hope you do not have too many storms. They are brutal.
I never heard of this before my heart goes out to the people who suffer with this problem good luck to you all hope theres cure soon
Thank you very much!
Tom Seaman there are plenty of treatments
James Edwards Yes there are. Thank you.
Thanks Deb !!
@@jamesedwards6589 what are the treatments? please let me know
It has just made me understand what is happening. I have it in one leg. People don't realise why all of a sudden I can't walk. Not because I don't want to. My leg won't let me! Thank you.
Thanks so much for your comment! I am so happy that this helped explain things, but so sorry you have to live with it. I hope you are able to find helpful treatments.
It feels like someone dislocating your joints and ripping your muscles, live from the battle 💛↖️
You’re such a strong person, you’re in my prayers, I hope the scientific world will someday come up with the best treatment that can help you and so many others overcome this condition. May God bless you and heal you.
Thank you very much!
Rewatching this with the feelings starting to fade to memories! It was hard to believe recovery could be possible when I first found you but I’m getting MORE than the life I used to have back. Thanks for being part of my inspiration, Tom!
That is so great to hear!! What have you been doing that has helped so much?
@@TomSeamanCoaching The most recent thing has been meditation actually. About 6 months ago I learned to quiet my mind to move outside my range of motion. All the practice I got in daily living seems to be paying off really big!
About a month ago I started digging in really deep to look for the answer to “why do I shake?” I came up with “fear of pain.” I started working on my relationship to the crazy dystonia feelings that make one squirm and it’s like another layer of the sickness peeled off.
With a lot of effort I was able to create a world where it was safe to practice driving in my head. I guess some call this astral projection. Funny enough, my vision was twisting in that place the way my body normally does but I perceived the dysfunction so clearly. The following week I had no trouble driving 120 miles. I also became aware of the contractions that create that twisting motion and it’s actually starting to stop!
Meditation has shown me that dystonia needs my fear to do it’s thing. Funny thing is I thought it was nonsense for the simple minded 😅
Glad you are for helping a cause.
I have had dystonia since 1993. After much research i have found massage works most of the time. Winter or stress makes it worse. My Doctor gave me a prescription for Klonopin. I started with 4 a day. Now i only take 2 a day. I have a neck collar with essential oil in which works. My best way to deal with it is l pray and know that The Lord is always able to help me relax. I am a Nurse and refuse Botox or any drug other than the Klonopin.
Hi Lillian - I have also found massage to be of great help. It is one of many tools i use on a regular basis to help manage symptoms. I am very happy to hear that Klonopin has been of help. I used that early on when my symptoms were more severe than they are now. I write a lot about my experience with medication in my book. Faith is also very important to me. I hope you continue to do well with what you are doing. You have had this a lot time so it is nice to hear from you and your experiences. Thank you.
@@TomSeamanCoaching 0
Wow you explained it beautifully! Thank You !!!
Thank you very much! I really appreciate hearing that very much! I hope it helps others :)
Thank you very much for these clear and precise examples.
Hope people who suffer with this horrible disease can soon find a cure or improvement on their conditions.
Thank you. We appreciate that very much. This is a tough condition to live with so the more understanding we have the better it makes us feel.
Thank you very much for your description! In Jan. 2008 I had a one-time full body dystonia attack that was so painful and disturbing, it brought me to tears. since then I've tried, without success, to find out what happened to me. despite trying to describe it to many many people since then, I've found myself shunned by those I've told who, I can only assume believe I lost my mind or was possessed by demons. It's only at this exact moment that I've found out what it was. I was fully aware what was happening yet unable to stop it. I crawled down the hall to my bed after more than an hour of twisting, arching, contracting over and over and over. I felt paralyzed and unable to speak after it happened for about an hour. I'm relieved I'm not possessed... here's to hoping it doesn't happen again. My heart goes out to those continuously suffering from this.
I'm sorry to hear you experienced this, yet so happy it never happened again. It is a scary ordeal for sure. Is some cases, a person can have a dystonia attack (typically called a dystonia storm) for unknown reasons or exposure to drugs, toxins, an injury, and other possible causes. For many who have these storms, they have what is a form of dystonia called generalized dystonia. It is very debilitating, some experiencing storms as a regular way of life. Here is a blog I wrote with more information about them. www.tomseamancoaching.com/what-really-is-a-dystonic-storm/
I am just reading this now although it was four years ago that you wrote it. I hope you have stayed healthy and have not experienced that kind of an awful experience again! Of course you were not possessed! This Seaman’s theory is probably correct-he knows a lot about it and wrote a good book.
Very good description. I've had a case of dystonia in my right arm and hand for the past 5 years. It has gotten better. It is very difficult for people to understand your uneasiness and pain. Thank you very much for your work, Tom
Thanks for your message. I'm happy to hear that your symptoms have improved and I hope you are able to continue to manage them a time moves forward.
Oh my god, finally. Ive been trying to find something like this for about 15 years. A way to explain - my boyfriend and my daughter see me go through this daily.
I only have this on the left side of my body. It flairs up at night to the point I can’t sleep - the muscular tightening & involuntary forceful jerking / twitching. I’m constantly apologizing to my bf throughout the night, because sometimes I nail him with my elbow / knees…
I’ve tried to explain the sensation - the constant urge to flex / flail … I’ve gotten really good at quietly punching pillows to vent my frustration
So glad I found this.
Hang in there everyone & thank you
I am so glad this was helpful!! It is so frustrating trying to explain to others what we go through, so making this video was really important to me.
Thank you Tom you hit the nail on the head. I've experienced these symptoms for years was checked for Parkinson's (negative) but still have all the cramping, shaking, etc. I also have spinal disc Degeneration disease which doesn't help out when trying to figure out what's going on. I am so glad I watched your video, finally I can explain what is going on inside me.
Hi Keith. I am really sorry you are going through this with so many symptoms, but pleased to hear that this video was of help. It is so tough to explain and have people understand. I don't wish this on my worst enemy, but wish people could live with it for just an hour or so to really better understand just how awful it can be. Thanks very much for your feedback. I really appreciate it.
Thank you so much for making this video I've been living with dystonia for many years now I'm 29 years old and this was one of the best videos I've seen on how to describe what it feels like for me everyday
Thank you very much! I am so glad you liked it!
As someone who struggles when trying to explain my father and brothers' symptoms, this helps IMMENSELY. I showed this video to them and they said "yes, exactly!"
I am really happy to hear that! Thank you very much for sharing that with me. I was really hoping this video would explain what most of us experience in a way that is relatable to others.
Thank you for making this video. This is exactly how I feel. I’ve had this for about three years now in my hand and it feels like constant stiffness and tightening in my hand when doing things like writing. I feel like many people don’t understand the daily struggle of these symptoms.
I am very sorry you are going through these symptoms. You are so right that many people do not understand, which can be a very lonely feeling. I hope this video helps them better understand. Please also consider sharing my book, Diagnosis Dystonia: Nagivating the Journey. It is for patients, loves ones, and doctors.
That was Amazing!! Ty!! Now I understand and I just love the way you were able to make me understand❣️
Thank you Delia Dee! I am so glad you found this to be helpful!
OMG I've been living with this for over 30 years, but just have been told it's muscle groups cramps, It is so bad ,it is crippling for me, but can't seam to get any help, now I can tell my Dr to watch this!
I am so happy to hear that!!! I am very sorry you were not properly diagnosed for so many years!! I sure hope this helps. Please let me know what the doctor says if you don't mind. Thank you!
Did you get your doctor to watch this? what was the outcome? I am in a similar story to yourself
Thank you for this video. It came up in recommend. I have MS, 6 yrs. my rt foot started doing this about 6 mo. ago. My Neuro docs never witness it when I have an appt...but I went to the ER last mo. and the attending MD witness my rt foot twisting and he said it looked like a form of MD called dystonia.. WOW!! This now has a name!! Thanx for the tips to show my friends and family!! God bless❤️
I'm so glad you found this video! Movement disorders are so hard to decipher, and some mimic other conditions and/or can accompany other conditions. I hope your MS is being well managed, as well as your dystonia. Usually not recognized by ER docs, I am so happy you saw one who put a name to it for you!
Very well done, Tom. Keep it up.
John Thatcher Thank you John. I really appreciate it. I know there are many ways to describe how dystonia feels, but I hope these examples resonate with a good number of people.
This is the best description of dystonia I've seen yet. Thank you! :)
Thank you! I a so glad to hear that!!
I have it with my legs, and I was diagnosed with it ever since I was probably 2-3 years old... (Maybe older or younger) Living with it sucks, and you feel like you're alone... Glad to see that I'm not alone :)
I am very sorry you have to live with this also. You are definitely not alone. Are you involved with any support groups, in person or online? I find them to be very helpful.
When a storm hits at night in my legs and feet, it feels like my bones are going to snap. The spasms are so severe. Now I'm finding my right hand seizes up. You described it so well!
Thank you very much about the video. I am very sorry you experience those severe storms. They sound horrible! Is there anything you can when they are happening to help minimize the symptoms?
@@TomSeamanCoaching I take a muscle relaxer and just have to ride it out.
@@sourgirl6359 I have heard the same from many others and am always looking for new ideas I can share. Speaking of which, here is an article I wrote about storms that you might be able to share with people who don't understand what it is like. www.tomseamancoaching.com/what-really-is-a-dystonic-storm/
Thank you it's a really good start
Thank you for this video. I have not been able to explain how this feels to me. I have been in so much pain and thought I was crazy until I was diagnosed.
I am very sorry about your pain. I was in a kind of pain I could ever imagine when my symptoms were at their worst. I empathize with you. I hope you are able to use this video to help others better understand.
Thank you. This was a great help to understanding what dystonia is, and how it affects people.
You/re welcome and thank you. It is great to get feedback when something helps!
Thank you for sharing, this helped me as a medical student. I appreciate your educational video.
I appreciate knowing that very much. Thank you!
Thank you so much for sharing your experience with us, it really helps put dystonia into perspective - especially for a current PA student only exposed to the technical definition
Hi Kate. I am really happy you found it helpful and I appreciate very much you wanting to learn more about it than the limited info available in medical textbooks. They do not remotely do this condition justice at all, which I hope changes in the near future. One of wishes is to speak to medical students about this condition, sharing the reality of it versus what they are exposed to in their studies.
Look up akathisia as well. I so happy to see a student learning out of the box. You will go far. Xoxo. My daughter is a nurse and she doesnt beleive. Hearts broken all from a lack of understanding. I'm so broken.
Thank you for all the information
I think you've nailed on that last one ~ Thanks!
Thanks Heather. That is the example I find most helpful for people to better understand.
This is a very good way to describe it, thank you for the video!
I’m very glad to hear you liked it! Thank you!
The Wim Hoff method works for Dystonia
Thank You Tom this is how I Have described it as well. I do like the one with the bicep .
You're welcome. I'm glad you found this helpful.
Tom Seaman so happy to see you in here. I see you on Facebook with all your advice.
Hi Cheri Jane. Thanks for your comment! Good to see you here as well!
Thank you for explaining so clearly !
My pleasure. I am glad you like it.
Thank you for passing your video. Very informative. God bless you. 💫💞😀
Thank you very much! I am happy to hear that!
Thank you! That was fantastic!
Glad to hear that. Thank you!
That's an excellent description of what it feels like. I even told my doctor it's like having a charlie horse all on my neck shoulders and upper to mid back.
Thank you. I am happy to hear this resonated with you and hopefully your doctor as well.
Such a great example. U hit the nail on the head.
Thank you very much! Please feel free to share it with others.
I don’t have dystonia, thankfully. A very dear friend has it and this is the clearest & simplest explanation I’ve come across on TH-cam. I’m doing my best to walk beside her & the more information I have can only help. It’s also a great way to explain to others. I’ll share this video. With deepest gratitude, I salute & thank you 😊
I am very pleased to hear you found this helpful. Thank you! I am very sorry about your friend and hope she is getting some helpful treatments and therapies to manage her symptoms. You are a wonderful friend to help her along. Too many people are alone living with this which makes it so much more difficult. Thank you for being by her side!
PS I’m sure that even with this sharing of the “how it feels to live with dystonia” doesn’t cover even 1/10th of the reality of it. But it helps. ♥️
Thanks again Tom. For me, it’s the easiest thing in the world, to simply be kind & have compassion. I’m powerless to change anything for her, and I’m mindful of the greatest wealth we can have, our health. Taken for granted by me in the past, (not anymore) & by many on a constant basis.
We need more people in the world like you. It's ironic that you mentioned taking our health for granted. Today I wrote a new blog about it. Here is a link to it if you are interested in checking it out. www.tomseamancoaching.com/a-painful-lesson-for-which-i-am-grateful/
Thank you so much sir for responding back to me I will go to the links and check out some more info and thanks again
You're very welcome and I wish the very best for you.
Thank you so much
Every time I see this vídeo I like it more. It is so very difficult for people who hasnt had dystonia to understand what it feels
Thank you. I am really glad to hear you like it, and I totally agree how hard it is for others to understand. I hope this video makes it a little easier for them.
great description Tom. Thank you!
You're welcome and thank you.
I have cervical dystonia as well .
@@TomSeamanCoaching Tom does Benadryl help with dystopia?
@@bobsmith3457 I am not a doctor so I can only share anecdotal information. Benadryl as a general rule is not effective or may cause or exacerbate dystonia for some people, but there are some people who use it with benefit, particularly some who experience dystonic storms. When it comes to dystonia, not medication is universally good or bad - much of it is trial and error.
Thank you for helping me to understand
You're welcome.
Wow, the drummer of one of my favorite bands recently got diagnosed with dystonia and cannot drum anymore, they won't go on without him- it's saddening.
That is very sad to hear. It's amazing how this condition can totally change a person's life and those around them.
Bro I freak out when my muscles contract in my legs shout out to you for dealing with it
Thanks. Appreciate that. It's not easy to live with.
@@TomSeamanCoaching Hello Tom, I have a question. I've been having a situation with my body but I'm not exactly sure what to call it. All I know is that it's uncomfortable and exhausting because my body feels like it's doing something beyond my control that I KNOW I DONT want it to do or Repeat :( And I also do experience shortened muscles because of this. Is there any way we could speak through direct form of contact? Thanks.
@@gabbysambienceofrivers4813 I am very sorry you are going through this. Please go to my website and you can schedule a call on my calendar. The site is www.tomseamancoaching.com
Wow. Great explanation. Never heard of this before. I hope there is a cure or technique for workaround.
Thank you.
Vey good video. Thanks from Brazil.
I appreciate that very much.
Hi Tom I have had about 12 dystonic reactions to anti sickness medication maxalon and stemitil absolutely the most frightened I've ever felt thanks for the video from Glasgow Scotland
Hi Amanda- Thankfully, I have never had a true dystonic storm which is primarily for people with generalized dystonia, but having had severe symptoms for a long time, it felt like I was in a constant storm. Anti-sickness/anti-nausea medications are thought to possibly cause a dystonia reaction, so please be careful with these medications. Wishing you well and I hope that you have no more reactions.
My mom has Distonia and it's taken over her body. My son got Tourette's syndrome, that as far as i know is related to Distonia. Thanks for explaining in such good way, now i understand more of this illness.
I'm very sorry your Mom and son have to suffer with these conditions, but I am happy to hear this video has made it easier to understand. Thank you for letting me know.
Great explanation, it is very painful.
Thanks very much for the feedback and I agree... painful indeed!
It also is similar to an uncontrollable pushing and pulling of a magnet sensation? I have something similar whenever I take some psychiatric meds I get that and when I’m stressed it comes out first as a initial fever sensation. It always gets my neck and my mouth
Thank you. That is another good way to describe it.
You describe it correctly!
Thank you!
My 6yo had a acute onset of dystonia but she has had symptoms for years. They were not diagnosed as dystonia and thought to be other things
She gad swvere back and neck pain one night. By the 3rd day she was having spasms in her entire body. Her arms and legs were clecnhed. she was screaming and saying she didnt want to do it anymore and to help her but she was shaking.
It went on for what felt like forever and thankfulky i got my ohone and recorded just a coulle minutes so i could show her doctor
We now have a medication to hse for times its that bar that does work very quickly bnot one i would ever thought we would use on a 6yo but it is what it is. And she started a daily medication ussd for dystonia.
The lain shes had in her leg and feet (mpre so right) for years now makes sense. Especially her right foot that would just suddently cramp up and she wpuldnt put any wright on it. Just sit and scream. Tremord startednat 3 that came out of nowhere in her hands and head but adter a year subsided unless fatigued
I am so sorry about your daughter! For her to go through that and for you to see it must be devastating. It sounds like a dystonic storm from generalized dystonia. Has she received a diagnosis?
I can here looking into my brothers tremors and just might have found information relating to my back “spasms” if hour + long single spasm from my bra line traveling up to around the rib cage and around my neck could be considered a spasm. My brother has been experiencing tremors and have gotten worse and worse over the years. I’ve experienced my spasm since the age of 9. Doctors have been useless so I gave up and just deal with it and am grateful for having been able to have an understanding husband and family so my life which has been affected negatively and I’ve been forced to alter goals, wants and needs I’ve been lucky. It makes me a little upset thinking there could have been something to work from and find a balance to have a purposeful and fulfilling life but I’m not mad just a little peeved but hopeful now. I’ll think about seeing a dr. Thanks for sharing this.
Hi Erin. I'm glad you came across this for you and your brother. What is your brother's diagnosis? As I kept reading, I wondered if there is a movement disorder genetic component? I am very sorry you have not been helped by doctors. That has been my experience as well, so I found that by stopping the pursuit of help reduced my stress. Now, like you, I find ways to deal with it. If you go to this link, you can read more about how far I have come from some very painfully dark places with dystonia, anxiety, and depression, and am able to live a much more full life now. I hope this story gives you hope - www.tomseamancoaching.com/about-tom/
this was awesome. I've been experiencing terrible pain in both my legs akin to a cramp/spasm/tightening feeling and I am currently recovering from a bad Ms flare up which started a couple of months ago with my lower legs going numb then my total legs with terrible tightening spasms. I've been researching and believe I have something now to pinpoint or at least bring to the table. thank you!!
Thank you! I am really sorry to hear that you are going through all you are, but so pleased to hear that this may have been of help.
Tom Seaman thank you! and thanks again for the vid! it's in my MS helps list. have a blessed day!😅
Thank you, Tom Seaman, for this insightful video on dystonia. Your practical examples, like likening the feeling to a charley horse or the sensation of wringing out a towel, make it easier for others to grasp the challenges faced by individuals with dystonia. The analogy of opposing muscles contracting simultaneously, as demonstrated with the bicep and tricep exercise, provides a tangible understanding of the internal struggle within the body. Your efforts to bridge the gap in comprehension about dystonia are truly commendable. Looking forward to more of your videos! 🌐💙 #DystoniaAwareness #NeurologicalDisorders
I am so glad this was helpful and so grateful for your comments! Thank you!
Very good at explanation
Thank you very much!
I feel it in my neck and shoulders.. been living with Myoclonus Dystonia for 50 years, clonazepam helps, but after 30 years of clonazepam and dystonia, I cycle through bouts of very deep depression.
I'm very sorry. You have certainly had this a long time. It goes to show that even those of us who have had this for decades still deal with the emotional challenges this disorder can bring. Do you have any tips you can share for others who experience bouts of depression? Thank you!
Great video
Thank you very much!
Very helpful.
Thank you.
You nailed it. Couldn't think of anything else to say to describe Dystonia. Would be nice if people were more aware of this health condition.
Thank you Paula. I hope these explanations help. Awareness is so important and I try to write as many articles as I can and post them in various places to reach a broader audience.
@@TomSeamanCoaching Thank you Tom...
I will now try to spread awareness.
Just need to figure out how??
@@paulakaiser7138 I suggest contacting the Dystonia Medical Research Foundation. They do great things for awareness and have many handouts and other things they can send you
@@TomSeamanCoaching Thank you so much for all the information Tom.
I want to let you know that your video helped my husband to better understand this condition. He now really understands it. Hurrah.!!
I would also like to get your book.
I'm sure it has great info. I'm going to look into all your advice. Thank you.😁
@@paulakaiser7138 That's great to hear that it helped your husband better understand. That was my goal with the video. I hope you find the book helpful. I had loved ones in mind and even wrote a chapter called Dystonia Speaks, specifically for loved ones.
I have it all over my body. I started getting symptoms when I was around 8 years old (I'm 18 now). It started in my left foot and worked its way up. I only started going to a neurologist a few months ago when I started getting involuntary movements of my tongue and cheeks. I only sought out help because I was afraid I had tartive dyskinesia because I am on a ton of medications for psychiatric issues. I know it's most common to get it from antipsychotics, but I hadn't been on those for years. The doc checked me out and originally gave me the diagnosis of Dopa Responsive Dystonia. I went on levodopa, but that made things a whole lot worse. I was only on it for 4 days before I had to go off of it. I was kinda sad that I had to stop it because it worked for one day and for the first time in years, I could walk without being in a ton of pain or having to drag my leg behind me. It was like a miracle... Until the side effects kicked in and I felt like I was literally dying (I had chest pains, trouble breathing, nausea, dizziness, and for whatever reason, my legs stopped working. Don't worry though, I went off it immediately and was back to "normal" the next morning). Because of that reaction, my diagnosis of DRD was taken away (I was pissed about that. I thought I could finally have a name for my problems, but they just had to take that away from me) and now I just have "Dystonia" on my long list of medical/mental illnesses. Is it true that Dystonia can cause psychosis? I have PTSD (and several other things) and the doctor said my problems with hallucinations, delusions, anxiety, depression, etc may have been able to be avoided if I had been diagnosed and treated earlier. Apparently I spent 4 years going in and out of mental hospitals for possibly nothing. I was pretty upset when I heard that, for obvious reasons. I still can't find a treatment for Dystonia, though. I've been put on several different meds that supposedly are supposed to help. They don't. Levodopa was the closest I ever came to a treatment... All my symptoms have gotten so much worse in the last few months that I can barely function. It's gonna be difficult when I go back to college and work in a few weeks. By the way, does anyone know the difference between Dystonia and dyskinesia? I apparently have both, but I can't tell which weird movement came from which disorder.
ThunderWingPony
I was diagnosed with dystonia as a teenager. (29 now) Mine was similar in that it started in the left foot and moves up the left side of my body. It is actually triggered sometimes by a rapid movement of my left foot/ankle. I find it interesting that you mention it can be caused by taking antipsychotics, as I took those from an early age. Never thought of that as a possible reason. Anyway, the neurologist I was going to put me on Carbatrol or Carbamezapine I believe is the official name, and it stopped all symptoms from happening. Maybe this could work for you as well. Hope this info helps you out. Worth a shot!
I was misdiagnosed with DYT1 dyztinia at age 16 but recently took a dna test found out I actually have Dystonia of the hands and arms. I am going to be tedted for Parkinsons soon
ThunderWingPony thank you for sharing this story. You will help a lot of people. It would be nice if you could become a motivational speaker about this problem.
ThunderWingPony Look up deep brain stimulation helped for me :)
I wish all of you the best of luck my hands on who was born at 5 months pregnancy he seemed to have some of these symptoms I'm going to research these problems that he has I'm praying for everyone
I used to have it in my feet when I was about 7/8. Then it went away and I started getting it in my neck and legs 10 years ago. I still have dystonia but it's under control most of the time.
What do you mean exactly when you say that is under control the most of the time?
weird see my dystonia went away in my neck thankfully but i still have it in my hands legs and feet and sometimes my core. no medication switch nothing...it's odd.
Wow I feel like everyday
I did the arm flexing you talked about, as well as did the ‘Indian burn rub’ on my leg. It probably doesn't even come CLOSE to what you all experience daily. Even.a nasty cramp (like I've had at times) doesn't come close. Still, thanks for this video, the channel, and the book. Very informative and educational. I hope you don't mind me reading that book even though I don't have dystonia. I did it out of curiosity and there was a fellow classmate from my childhood who might have had this condition and wanted to know more. Keep up the good work, and keep being awesome! :D
Question: how do you feel about folks like me doing impromptu research on the condition?
Thanks for the feedback. I am more than happy having people do research on this condition... and reading the book. Although it has dystonia in the title, I think it is applicable to most life challenges.
Thank u this was so helpful now I can explain this better to my doctor & maybe I can now get help I get this in the back of my legs & on both sides of my stomach and I usually have to keep massaging my stomach & legs to get some relief thank u
You're welcome. I'm happy to hear you found it helpful. I hope it helps your doctor. It's a pity they don't understand us better than they do. It might also help if you were to get him a copy of my book. It's good for those who have dystonia and for those who treat us. Best wishes and thank you again.
I'm so sorry, Hermosa 3577. You are so young
Yes, it's exactly that way even when you are older. Keep stretching and try red-light therapy. I go into the pod and the bed. The pod helps me to breathe, and the bed helps my facial muscles and depression. It's worth every penny. Plus, I feel better because I'm drug free. I hope it helps you to. Keep it up, though, for at least 6 months
Charlie horse hurts so bad!! I'm so sorry you have to live with this my God.
I deal with dystonia in my right abdominal wall. When an episode occurs, I am completely incapacitated until it eases. It is so painful that I immediately break out in a cold sweat, I see stars and nearly pass out, I often have dry heaves simply from the pain level. I just this week had it formally diagnosed after having no idea what was going on for many years, as well as having former doctors think I'm faking or exaggerating.
Hi Lana. I'm sorry you are dealing with this also. It is unfortunate that doctors don't believe us and think we are making it up. This is why education and awareness are so important. I am not sure, but it sounds like what you might be having are dystonic storms. Has this ever been mentioned to you? Here is a link to a blog I wrote about them I hope you find helpful: www.tomseamancoaching.com/what-really-is-a-dystonic-storm/
DEAD FUCKING SERIOUS I'M CHECKING UP ON THIS VIDEO TOMORROW.
I have had Dystonia for over 40 years
I've complained for the last six months about dystonia. It just keeps happening! My doctor blows me off but it's getting to where I cannot ignore it! I did your exercise, and sure enough the bicep exercise put me into severe spasms! It always seems to happen on my back and front ribs (bilateral), both shoulder blades, and my arm, and sometimes even my tummy (like below my belly button, my abs ripple!). I'm at my wit's end! I even had some lipomas surgically removed thinking they were pushing on a nerve, and for two weeks, got some relief. Then, they came back full til boogie! I cannot drive my car, cannot reach behind me, push a broom or vacuum cleaner! But it started on the right rib, rear ... and seems to want to start there, STILL. HELP!!!!! Will go to your page! I live in Alaska and healthcare is not optimum here.
Hi Terry. I am so sorry you are going through so much. When you say it "keeps happening", can you please clarify? Is it constant muscle spasms/contractions or episodes of spasms/contractions?
Hello Tom , I really hope you will have time to answer me , firstly I must compliment you on how well spoken and well presented your video is , you may just brush as a past this as a passing compliment , but there are few presentations as easy to watch , which make the listener feel both at ease and at the same time individually important. My question from the Uk is I have been dancing around (not literally unfortunately )looking at dystonia diagnosis for about ten years, each time thinking "nah " until I cam across your video. Because when you see the examples on sites they look so extreme , that I would feel foolish asking my GP. My symptoms from your info would seem to be focal cervical but not extreme in that I look fairly normal , but the opposing muscles cramping and the twisting are something I have been having trouble explaining. I would describe my feelings as stretching in an elastic straight jacket , like you may find temporary relief but the muscles would always tighten up back to their original position. I find it difficult to walk far as my neck stuff seems to affect my leg muscles, squatting, my ribs feel tight ....and I have to moderate my activities as you explained in your video .....when I try to release my neck and shoulder muscles, I may get temporary release but I end up turning them all on and get uncomfortable cramping all day...does this sound like it could be dystonia ??? thank you for your time and your video
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.
th-cam.com/video/PeNo4ff4mEo/w-d-xo.html
I've lived my life never knowing exactly how a Charlie horse feels. I've had people much stronger than me punch and kick my muscles hoping to make me hurt but I just never got hurt by it. This video has made me realize how lucky I actually am. Something I take for granted is something millions of people dream of.
My heart goes out to all of you living with this. I hope your pain fades some day and you get to live a normal, happy, healthy life. The next time I take something for granted, I will stop and think of the people who don't get that option.
just diagnosed with spasticity and truncle dystonia. . im thankful that it's not as bad as others i take 100 mg of Baclofen daily with 600 mg of carbolevodopa to keep me walking..otherwise my legs would be so tight i couldn't walk.
Sorry about your diagnosis, but so pleased to hear that those two meds are so helpful! It is so interesting how differently the symptoms of dystonia manifest and the variation in treatments. Continued success to you!
thank you so much! it was very helpful to understand for my pathology test. I'm sorry you have to go through it and I wish there'll be more advancements in the field and better treatment.. hopefully a cure.
Best wishes
Thank you for letting me know it helped. I am curious, what program are you taking where they are discussing dystonia? I ask because it is not something most people study. I too am hoping for greater advancements. There is still much to be learned and put to practice. We will just keep on doing the best we can. Thanks again!
Tom Seaman I'm a 3rd year medical student, it's for my pathophysiology course among extrapyramidal disorders.
yeah it still amazes me how little do we actually know about the nervous system and it's pathologies.. hopefully things will change soon
Thanks for sharing,. I am trying to get my dystonia book into medical bookstores and possibly made part of either suggested or required reading for various courses. Do you have any ideas for how to go about this? The book is not just about dystonia, but life with a chronic condition and all the many things patients experience beyond just the physical. Most of the topics are things that patients complain are often disregarded or shoved aside by doctors, making them feel even more alone and thus, experience greater suffering. I have been watching videos about extrapyramidal disorders and am honestly shocked at how poorly dystonia is described, as well as the shortsighted view on treatments. I know it is near impossible to go into depth on the millions of conditions a doctor may encounter, but this was alarming. Now I understand better why so many people feel lost when they see their doctors when they first present with symptoms and why it takes an average of 5 doctors (on the low end) to get a proper diagnosis.
Great video - thanks for producing it.
I’ve also compared dystonia to intense hand cramps, but that affect different muscle groups
Thanks Paul. Glad to hear you like it. I appreciate it.
Ive gotten dystonia due to being given haldol for severe anxiety. Thank God i caught it right away and went to the hospital bcuz it can be permanent. I could barely talk and every muscle in my body was contracting so i could barely move my neck arms and hands i also had problems with my vision and lights bothered me so bad for about 2 weeks after the onset of it.
I am so glad you determined the cause! People can have a dystonic reaction, and it sounds like dystonic storms in your case, as a reaction to medication. Once that medication is no longer taken, it can often resolve the symptoms. I hope you are not still having symptoms. I have had it for 20 years and would not wish it on anyone.
@@TomSeamanCoaching I'm no longer having any symptoms i was given benadryl and an epipen plus another medication but i forget the name of it once the meds were in my system it went away fairly quickly and i have never taken haldol or any iother med in that family again. I'm sorry u have to deal with that 20 years my God i would go crazy.
@@tiffanycayce8701 That is so good to hear you are not having symptoms anymore. Thankfully, over those 20 years I have been able to find ways to manage my symptoms, but those first 5 or so years was beyond words horrible.
My son is 4 years old and has Dystonia. He has been having these episodes every single day for 4 years
I am so sorry to hear that. It must be such a helpless feeling a parent to see your child suffer. I hope he is seeing a good doctor who is able to find treatments that are of help.
I can attest to the fact that Cervical Dystonia feel HORRIBLE, EXTREMELY PAINFUL, TERRIFYING AND OFTEN MISDIAGNOSED AND NOT TAKEN SERIOUSLY. AND YES ITS DEFINITELY A SEVERE CHARLIE HORSE IN THE NECK. I suffer from the lateral 1 where my neck goes to the right and 4 whatever reason if i smoke a cigarette 🚬 (I know crazy, right) while having an "episode" it would worsen SEVERELY and I'd also begin to start feeling a twitch and tremor. UGH ITS 1 OF THE WORST AND SCARIEST PAINS 1 COULD EVER FEEL LIKE SERIOUSLY. I'm now having SEVERE pain in my left trapezius. I've been managing okay doing hot showers, using vicks vapor rub on it ESPECIALLY b4 my shower, using my lidocaine patches, massage gun, self massaging, ibuprofen, pain killers (only 5mg UGH), baclofen (from my dad, ive read online it helps) and now im debating going to the ER if i dont get better after yet another hot shower. I DEFINITELY need some type of shot/injection and a Xanax or ativan. To make things worse I also suffer from SEVERE panic attacks, anxiety etc, headache and general body aches and pains. Anyways my apologies 4 the long comment and I hope and pray anyone else suffering gets better.
❤ GOD BLESS, IN JESUS CHRIST MIGHTY NAME AMEN AND AMEN❤❤❤
TAKE CARE
This is true it does feel this way with dystonia. Mine was good for awhile after getting dry needling done at physical therapy. I would be sore but then few days be better then it would come back about 5 days later. I'm unable to play the guitar like I use to from the movements in my hands and my neck. I was wondering even with the cervical dystonia could it infect the way we speak like I feel like I'm speaking loud then I'm having a soft voice even family notices it. Not sure if it's my hearing or my throat. I sometimes feel like I can't swallow good with food from the muscle spasms. It's awful somedays with pain. Also noticed stress causes the symptoms to get worse. It helps me to listen to music or draw. I also like to watch movies and shows. I like your videos. Have a good weekend.
Thanks for your comments Amber. I have never tried dry needling, but I have heard good things from most people. I tried to take up the guitar and it was too strenuous on my neck/shoulders. Cervical Dystonia can affect our speech if we are super tight around the neck and upper back/chest. It can change our breathing as well as our voice. It may also be spasmodic dysphonia, another condition in the same family as dystonia. Swallowing difficulty is also a problem. It has been for me for years. Stress is also a killer for so many health problems. Makes them so much worse. Here is a blog I wrote about stress and stress management. dystonialiving.blogspot.com/2016/12/stress-management-tips.html. I also encourage you to get a copy of my book if you don't have it. You can find it here www.diagnosisdystonia.com/. Thanks again for your comments! I hope you are able to find more relief soon.
I been suffering for 30 years! I have lost all abilities to play piano, guitar, bass and drumming. I suffer full blown storms every few nights even on meds. It has become a horror. It is hard staying positive after this long, and adapting is becoming harder also. So tired of doctors not caring or giving up.
Thanks for getting back to me it wasn't till one happened while I was in hospital I was on IM morphine when you get it they give anti sickness injection at the same time my spasms are head to toe cyclizine is the only one that I can have the ones at home lasted up to 4 hours terrifying
That does sound terrifying!! If you ever need another prodedure, I would go without the anti-nausea. I heard from a nurse friend of mine with dystonia that the anti-nausea meds Reglan, Compazine, Torecan, and Emete-Con may cause a reaction. Hopefully if it does it is only temporary.
Thank you for sharing this!I think I have it.I have all the symptoms but haven't been diagnosed.Would they have to do an MRI to diagnose this disease?
Some doctors will order an MRI, but not to see if you have dystonia because it will now show up on an MRI or any other diagnostic test. An MRI will rule out other conditions and maybe reveal something that is wrong that might be a cause of dystonia. However, in most cases, a diagnosis is made by a visual examination by an experienced doctor, typically a neurologist who specialized in movement disorders, but anyone who has experience with dystonia can make the diagnosis.
My doctor put me on an anti nausea med and I had this allergic reaction. It went on for like 10 hours and I was swinging my neck around like an absolute crackhead with no control, hands down the worst allergic reaction of my life.
I'm very sorry to hear that. It is unsettling how many different things might be the cause dystonia or a dystonic reaction. Because anti-nausea meds can contribute to dystonia for some people, it is often not recommended to have them during surgery, which is common practice. Not everyone will have a reaction, but just in case it is best to avoid them if possible. Was your anti-nausea med for surgery or something else? Thanks.
I dont know what i have but these symptoms i do have. 1: muscle contraction throughout my entire body, head to toes
2: charlie horses
3: zaps in my head while trying to sleep/bright light in my head
4: the feeling of my whole body vibrating
5:numbness/tingling/Prickling
6:arms, legs get really warm/hot
All these symptoms have been happening for years and the doctors seem to not believe me or just not know how to diagnose or treat me. Ive gotten MRIs, brain scans, nerve conduction and a couple other i can’t remember. I dont get much sleep because of it and it just makes me depressed and quite frankly im fucking tired of living with it and the fact that nobody knows what i have. Im currently writting this at 3am because sleep is obviously not a choice. Whom ever thinks they can help me please do, im desperate...
I am really sorry about all of this! It sounds horrible and also very consistent with what many people with dystonia experience. Has dystonia ever been mentioned? Have you been to a neurologist, particularly one who specializes in movement disorders? I do not know if you have dystonia, but it could be some sort of movement disorder.
YES exactly the bisecp example is perfect example with me what am feeling on my HEAD :( during this shit dystonia
I am very sorry to hear that you also suffer with this.
rizwan khan I’ve got this in my head and face I can’t take it any more
My fiance is awaiting a neurologist consultation but this is exactly how he describes it. As if someone else is controlling his muscles and he cannot control them himself til a while after he recovers from an attack. Even then he is slower and weakened because the muscles are just so exhausted as is he. I can see its incredibly painful so I'm really hoping that he can get some treatment that helps him (currently on soen meds GP have him but they mostly seem to make him more tired and bit spacey at times)
I am very sorry for him. It does sound like dystonia and I hope the neurologist can help make a diagnosis. I strongly encourage you to get a copy of my book to help with many things doctors don't tell you. You can find it here.. www.diagnosisdystonia.com. In the meantime, since you mentioned "attacks", please check out this article about dystonic storms.- www.tomseamancoaching.com/what-really-is-a-dystonic-storm/
I have Paroxysmal Kinesigenic Dyskinesia and have been taking Phenytoin Eptoin for it for the last 10 years. I don't get any seizures if I take it on a regular basis else I get seizures but only for 5-10 seconds. For me, it is not that painful but hope that it will go away completely someday and I don't have to rely on Eptoin.
I took Phenytoin for about 8 years in my 20s for seizures I had in my teens and early 20s. Some speculate that it might have been one of the causes of my dystonia. I am so glad it hear it is of help to you!
@@TomSeamanCoaching yes it has worked for me. I also asked my neurophysician about carbamazepine but he said phenytoin has lesser side effects so just keep using it only. So I use Phenytoin
This is EXACTLY what I am going through. It happens in my feet and lower legs, and the events are excruciating. I have tried for over 3 years to explain this but doctors seem to go nowhere with this, and I gave up, thinking I was crazy. I have an appointment with my neurologist in 2 days and I plan to keep pushing until someone can name this thing that is happening. The example of the bicep was perfect. I know I am not crazy, but these events drain me and are all consuming.
I'm sorry you are experiencing this. You are definitely not crazy. This is all too real, but sadly it is often misunderstood. When you mentioned that you have "events" it sounds like you might be experiencing dystonic storms. Please check out this blog I wrote that goes into it in more detail-
www.tomseamancoaching.com/what-really-is-a-dystonic-storm/. Good luck at your appointment. I hope it all goes well and you can get some help.
i went through the same. it's been 4 years i hope you found help. it hurt when i did because it didn't change much like i had thought it would. it's nice knowing you were right in some way i guess though but that's when my depression really kicked in when i was diagnosed. i think women have it harder with doctors anyways at least from what i've heard from my gf she's an ER nurse.
Are there warning signs before an attack? Are meds available to reduce the attacks? What triggers an attack? Very informative video and well done. Cheers from Canada.
Thank you about the video. I appreciate it. We typically don't refer to them as "attacks" unless we are having what is called a "dystonic storm." The symptoms for most remain chronic and involve involuntary contractions that can change body positions for many, while for some there is no difference in appearance. Just how it feels on the inside. For those who have dystonic storms as part of their symptoms, they can be triggered by many things, too long to list here, and for those who have them on a regular basis, they can usually tell before they happen. Even for those who do not have dystonia storms, their symptoms can also be exacerbated by a variety of things as well... usually anything that threatens the their neurological system. If you are interested in more about "storms", please check out this blog I wrote. www.tomseamancoaching.com/what-really-is-a-dystonic-storm/
For me an attack comes without warning, you can tell when it's happening you feel your muscles start to tense up, but for me it can happen once a month, or 20 times a day, depending on stress!!! For me it's stress induced so whenever my anxiety is high it happens which makes the anxiety worse it's a horrible cycle
For me I get storms when I'm stressed out, when I'm put on the spot, or depressed! It was triggered by a concussion I had when I was young and its really weird, I can go weeks without having an episode then randomly it will happen whenever I start moving!
I am very sorry. Stress is a big trigger for many of us. I had head trauma when I was young as well, which might have been a cause or one of the causes. It didn't manifest until 20 years later so I am not sure if related. Do you have any symptoms in between the episodes?
I have akathisia and dystonia. Its horrible. It's so painful. The pain alone is life threatening
I am so sorry and I couldn't agree more. If you have reached the brink, please reach out the suicide hotline and please contact me as well. I have been there and know how horrible it is.
@@TomSeamanCoaching I'm in a bunch of akathisia videos. I am one of those who has filmed this horror story. That's so kind of you to offer your assistance. Most dont care. Your a warrior xoxo. Lucinda meyer akathisia nueropothy tinnitus agoraphobia. Millions of symptoms all at once. God help us all. Keep speaking out. Ty ty ty.
I am now 33 months free of all medications. Still disabled but healing very slowley.
I think I may have this? The feelings you described are what I feel. I get really bad twisting in me core to the point now where i have noticeably larger muscles on my left side as i am twisting to my right. My shoulders neck and face are also doing the same. and in my face and jaw it is so bad. I feel like it also goes deep into my head. my mouth on one side is pulling into my neck and the opposite side of my mouth is pushing towards the same side everything twisting into the right. It is a constantly battle to try relax and stop it happening and even trying to counter it by going the opposite to 'undo it'. It is mentally exhausting and some days it is do bad i feel like throwing myself off a building. The doctors just think i have bad posture and from some previous injuries but i haven't told them everything I just said here as i felt I would sound weird or over dramatic. It is literally so infuriating. I dont even know what to do anymore. I dont know if my body is doing it from bad posture when i drive or if i have what you are speaking about. this has been going on for years and i first noticed a twisting type thing in my shoulder and core. long before any injuries but i just thought it was bad posture. I literally feel like crying right now it so is bad today.
I am very sorry you are going through this! It is so uncomfortable (an understatement). I don't know it if it is dystonia or not, but many of the symptoms sound similar. If you haven't done so, please see a neurologist who specializes in movement disorders. They should be able to identify what is happening.
I am experiencing the same symptoms as you describe, did you ever get a diagnose?
This is what scares the hell out of me b/c of taking antipsychotics. I hope I don't develop this condition with long term use of the meds. Do u know if there's a big proportion of people that do get this from long term use of antipsychotics?
Thanks for caring enough to explain the feeling, even tho it still worries me about it being painful like a charlie horse.
The data is weak on the actual number of people who have dystonia so it is hard to say how many develop it from taking antipsychotics, but the number is low so please don't worry yourself thinking this is something you might develop. Some antipsychotics are even prescribed from some people with dystonia, depending on the form of dystonia and other factors the person is dealing with.
Oh, thank you! I would've never thought that in the world. There's really only negativity about antipsychotics, but it really has helped me...not freak out. To be able to function. I would just get super delusional paranoia. But anyway, this news is very comforting. I'm glad I asked u.
I use Carbamezapine at low doses, it seems to help the most for me as it is anti-convulsant. My particular form is PNKD.
Thanks for sharing. I'm happy to hear that is helpful for you.
What's PNKD? I take Ativan but it doesn't do much anymore -- unless I take like 5 mg and then it knocks me out!
I was some what diagnosed with dystonia when i was 15 by a neurologist, 10 years ago but i think he said he wasnt too sure still and gave me meds as for incase i have it. I have my body overtaken by typical dystonia whenever i reach top speed running, sometimes pull ups and just generally i do something explosive or strenuous in a certain way. I can also bring it on when i want by sending a kind of shiver through my body as if all my nerves are going off. Would you know if this sounds like a certain kind of dystonia? Cause from youtube most people i see have it permanent where as i only get it under certain curcumstances? And what meds would you know have helped people? Thanks alot
+shiozza What you have going on sounds most closely like "task specific dystonia", if it is dystonia at all. Here is a link to more info: ghr.nlm.nih.gov/condition/task-specific-focal-dystonia. You are correct in that most seem to have more constant or permanent symptoms, but with most people, regardless of what kind of dystonia, excessive stress and excessive activity make their symptoms worse. As for medications, there are a lot and it would be unethical of me to suggest any. Sorry about that. Best thing to do would be to Google "medications for dystonia" and see what comes up. I would also contact the Dystonia Medical Research Foundaton (DMRF). Here is their site: www.dystonia-foundation.org/