Cervical Dystonia (head shaking) & Nystagmus (eye shaking)
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- เผยแพร่เมื่อ 18 มี.ค. 2017
- Well, the dystonia is back. I guess it never left. I've also been experiencing nystagmus, a condition where my eyes shake/shift uncontrollably. My physical therapist explained that there are crystals inside of your ear (calcium carbonate crystals called otoconia) that can get dislodged. When this happens, you experience vertigo, and your eyes will shake. This can all be remedied by the "epley maneuver"
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Thanks for sharing! I really hope my story will help some people:
After many years of doing personal healing I strongly believe this is due to stuck trauma. I suffered from childhood trauma, many years of bulling, loss of a parent, physical trauma ( amputation of fingers), which resulted in drug use/abuse, adhd, body dysmorphic disorder, OCD, perfectionism, Post traumatic stress disorder and some other things.
For me it all came down to unprocessed emotions, fear, stress and trauma.
I tried many forms of healing which I don't want to go into now but want to share one that helped me the most and brought me to this insight of the root of this disorder.
That one is TRE or Trauma Release Exercises. It's getting your body back in homeostasis, releasing all the stuck (negative) energy in your body through shaking and I've been shaking for 8 months, sometimes for 6 hours on end. Night and day. It looked like in the film the exorcist :p my whole body, legs, back, hands, fingers, head, eyes everything was all over the place.
Is the same you see ducks do, flapping their wings after a fight. Or what a zebra does after being chased by a lion. They lay down and shake. Releasing fear, tension and stress.
It was exhausting and hard but you can feel the (fear) energy leave your body. It slowly dissapated over time. And now left with a few Tics in my neck, left lower back and eyes which are getting better everyday.
So, how it looks from my perspective:
All the tics/spasm I have are related to the words, images and triggers that are related to my trauma and ocd themes. Evertime I am reminded of, or think about those things that gave me that intens anxiety which you have when you have ocd and PTSD I will experience that spasm. If I focus in my body to that part where that spasm is the word or image of that trauma comes up, or, whenever I am reminded of my ocd obsessions and fears, I will have that spasm. Also when I'm under physical, mental or emotional stress it gets worse.
For the eyes:
I would lay in bed or on the couch for hours, month after month just watching my eyes go everywhere, fast, slow, jerking, spinning everything. As they say, the eyes are the windows of the soul. All movements were connected with the movement of my eyes. So whenever I see my mind racing and telling trauma and ocd stories, my eyes would go twitching. If the mind is calm eyes and body is calm. The movement of the eyes correspond with places in the body and mind. You can see yourself (and others) looking around with their eyes when they are thinking. So what my finding is is that all the mental hard wired constructs became stuck in your physical eye (muscles) and releasing to get back in homeostasis. Back in the normal resting position of the eye. So everytime I have the moving of the eyes it corresponds to the mental images and story of my past.
I am sure that when I've resolved my emotional unbalance and transformed all those stuck energies and rewired those mental-emotional-physical hard-wiring I will be free from this.
Can anyone let me know if you have this same experience?
Hope this can be of help! And please ask if you have any questions.
Love and good luck healing!
Eye shaking has not been an issue but I have head shaking at night when I lay down.
@@chipanderson8411 same here
@Tommy Tommy Hi, I read what you wrote and you are right that whenever you think about something or focus in that specific area of your back head it starts to shake because it was like that for me too. I started going to the chiropractor and it's going away and whenever I think about it or get anxiety or the weather is cold, it's not the same as before, this thing can be fully cured so that it won't happen again. I'll say it again, yes it's your Cervical Spine that is messing you up that is why your head shakes and does not rotate equally. Why? The Chiropractor revealed it to me and I hope that you listen to me and you go to a chiropractor ASAP because that's what it is, I'm just trying to help you feel better because I care about you, it sucks to be like that and you even mentioned your shoulder problem. Please take my advice, thank you.
I forgot to mention that it also affects your vision and your eyes just like you described, well not anymore. Thank God.
@@theawakened1502 alcohol is best medicine... Small amount of alcohol
I was once a normal kid living a happy life but then this head shaking came to me and ruined my life. :c
Luis Carlos Tabian I am so, so sorry 🙁 I fully understand how devastating it is to have your quality of life be completely transformed. It can feel overwhelming. What things have you tried to treat your tremors?
It is lyme.
Lorianna1969@hotmail.com for help or suggestions
Luis Carlos Tabian same...
I just want to know that am i suffering from same thing,my head is shaking but not regularly after the gap of 2 or 3 mins or less or more but not like this..plz tell me am i suffering from essential tremors??plz reply...
I am having a habbit of shaking my head in front direction
It is so embarassing
I am so sorry that you are experiencing. It can feel so embarrassing. I have found that certain things make my own shaking worse: caffeine, adrenaline (fear), anxiety- anything that gets your heart beating faster
Why did I only seen your videos now? I felt the disorder when I was 13 yrs old. I only got diagnosed when I'm already 16 unfortunately. And it was the main reason of my depression and anxiety. I break down and I didn't know what to do, medicines never work for me, I suffer more from them because of they're side effects. The last time I saw my neurologist he told me to have a surgery, and I never want my skull to be opened. I'm young and I don't know, I just stopped seeing my doctor. I totally lost hope. Now I'm 21yrs old, and I still don't know how to tackle the disorder. And it's still taking a lot of good things that should be happening to me at my age. I couldn't finish school because of this. But seeing your videos gave me hope. Anyways I have head tremors and face spasms that shows more often when I'm anxious or nervous, I also found out recently that my right arm is also shaking but ain't that much so I just ignored it. I don't really visit my doctor for a long time, he's not helping me in anyway so why even bother. Maybe you could share how you tackle it or what exercises your physical therapist is giving you lately. It would really mean so much to me and also for people who have the same issue. Thank you in advance.....
Thank you so much for your comment. I have to say, you are not alone. I have full confidence in you! Don't give up because of dystonia. I do realize how hard it is, especially in class. My dystonia started in my last term of college. I'll be posting new thoughts, and different exercises that I have learned through my PT. Hugs
hi, it happened to me when i was 13 and i was depressied and anxious in school. do you feel better now?
Hi Frances. We go through just the same. I have tremors in my right arm too. We just have to keep going and still go on with life ♥️ I am currently seeing a neurologist too. But found this video and glad that i can do some physical exercises .
Hi Ashley, it's really interesting working through your videos. I have had 'episodes' of nystagmus at times too but not at the same time as The cervical dystonia that I now have, almost identical to you. Quite weird really. Didn't even consider them to be linked until this video. Thanks so much for sharing.
OMG I have to say you have no idea how excited I was to see this. Mainly because I have the head tremor exactly as you described (and nystagmus as well) I had an MRI done and they found Chiari but don't think it was the cause. The regular neurologist was baffled no clue other than she declared it an essential tremor but said it didn't really fit because it was my head. The neurosurgeon ordered another MRI which I do this week and he is looking more at instability. He wasn't sure but he did say he knew it was absolutely abnormal. Just to see someone else who has it gives me hope as to figuring it out. (and yes I think I do have one shoulder higher than the other) I've been trying to get tested for EDS and can't get anyone who is knowledgeable )
Thank you so much for sharing your story! It is encouraging to hear. Let me know what they find on your MRI. Have you had one done before? They can offer you headphones and music, which can really help
I have dystonia, shaking head, nystagmus and vertigo. Having the symptoms altogether is awful. I have heard of the Epley manoeuvre but hadn’t put it all together until I saw your video. I’ve had all these symptoms since I was 40 and am now 57. My dad has the shaking head and vertigo and recently had the Epley and it worked for him. The head shaking is still there but at least he doesn’t get the terrible bouts of vertigo and sickness now. Thanks!
Thank you! I have exactly the same thing as you, and have had two eye shaking episodes. I’m in physical therapy now, and will consider the Botox treatment. There are certainly worse things to have, but this is aggravating!
I've been going through this for years and not known why... this information is something I am grateful fur
Hello. I know this is a while since you posted this but I can certainly tell you a few things about vertigo symptoms and dystonia. This will be a fairly long reply. I too have cervical dystonia and much like yours I get the head shakes. I have for years now taken botox injections and they are very helpful. When my dystonia started (pretty sure it was from a head/neck injury that happened 2 months prior to the onset). In the beginning it started fast and hard...I would turn my head either direction and my head would shake violently, it slowly got better even before the botox but until the botox injections I always was feeling the more pronounced head tremors. - after botox they were much less noticeable - they were still there and still are today ever so slightly but more so when stress levels are elevated. I have had to give up coffee and teas as they will aggravate my dystonia very quickly...for the most part I can still tolerate sodas as they dont seem to bother me as much but only a little. Alcohol will aggravate as well after more than 2 drinks. So moving on, I also experienced occasional vertigo, and had several episodes during the worse parts of the beginning of my dystonia...havent had much in the past few years. I went thru a very thorough hearing test in the beginning and was told I have permanent damage in my right ear for reasons unknown. But I can tell you thru the test that when they blew warm air into my right ear it immediately set the vertigo off and will to this day. I truly believe these two issues/diseases are tied together as you and others I have meet and spoken with have similar issues...So, sadly dystonia never goes away...it has ebbs and tides...I know it is life changing and I truly truly understand where you are!! Also with my condition, doctors still had hard time understanding it, in the beginning when I laid down my blood pressure would increase fairly high when it should have been going down and the doctors could not explain it...actually never did. But with that, I have had to elevate my beds position so my head is much higher than normal. The reason being is that even today if I am laying more flatly I will wake up with very sick head/body feeling and subtler tremors and experience really bad night mares...which I believe are happening due to my body having blood pressure/abnormal issues and its trying to wake me up to get out of the laying down position...the dreams are really extreme and Im sure the sickness I feel is the dystonia creating the issues...like you its so hard to explain the issues that I incur. Also I was a perfectly healthy person before this started. I have learned to live with it but it has certainly change things in my life, as Im sure you are aware of. So the issues you discussed here certainly have similar traits of my situation....if you are like me I still question things about it but in the end it is what it is and I just try and find the things that work and dont work. Hopefully this has assisted you in some small way. I truly understand!
Thank you so much for your comment! I am so sorry you are going through this. I do find it very interesting that you also have the vestibular issues. I always felt these were two distinct issues, separate from each other. But you have heard others who suffer from dystonia and ear/balance issues? Thats incredible. This is exactly what I had hoped from this channel, that we could all pool together and discuss similarities, hopefully learn things. Thank you!
I have had ear problems with what I am thinking might be Dystonia or some other neurological issue. And I had the blood pressure problem. I would wake up with the urge to pee though. Glad I would wake up bc when I got up I would be light headed or dizzy and feel sick. I took my blood pressure the first time it happened and it was really high. I went to the ER but they said I was fine. I soon realized just staying up for a little while helps to lower the bp. Unfortunately raising my head only made the pinch nerve in my neck worse though it also helps with the GERD. But I can’t take the pain it causes. The head exercise mentioned in this video helped with the ear problem which also seemed to help with the balance issues and dizziness. I don’t know about the blood pressure bc I no longer check it. Just glad the dizziness went away. I hope you find relief. Thank you for sharing!
Ruth Pratt wow this is crazy I don't know if I have dystonia or not it's really confusing bc I have some similar symptoms but I don't know for sure like every once in a while it feels like there is a small earthquake going on but just with me its like my eyes are making the room shake it is subtle but I know it's going on it makes me feel like I'm crazy because my head doesn't shake like you all's but it's like I feel the room shaking but I do have to say this only happens every once in a while. I'm 17 and at times I have high blood pressure idk if that has anything to do with it but I do every so often. Oh and I have excruciating migraines, not all the time idk if this too ties in but yeah is this dystonia
Steve, in wich body parts u used botox? I live in Lithuania and these botox procedures are only for beuty like lips and etc u know..
I was diagnosed with cervical dystonia last year, and I experience the limited range of motion and eye shaking. It constantly feels like something is pulling my right shoulder and sometimes I will get a twitch really hard or a shake like I'm saying "no" depending on what I'm doing. The pain in the base of my skull and shoulder, and shoulder blade is intense, and hurts worse if I turn my head. The tremors are annoying and getting in the way of my life. My eyes have been off today and everything around me felt like it was moving, and my eyes started shaking bad again tonight. I am waiting to see a movement disorder specialist. I just wanted to let you know that I'm going through the same problems as you and it feels good knowing that I'm not alone, although I wouldn't wish this on anyone!
Thank you so much for sharing your story. I am so sorry you are going through this :( Have you ever seen a chiropractor or physical therapist? When I saw a chiropractor he said that my cervical vertebrae was misaligned (sort of shifted off to the right). He adjusted my neck, and said that it was back in alignment. But it is something that requires continual readjustments.
I'm 45 and from Liverpool UK and I can relate to your story. About 25 years ago a friend noticed my head was slightly shaking from side to side, so slight that I never noticed it. Over the next 10 years it became more frequent and more noticeable, to the point were I would avoid social situations . It might come on me for 20 mins or so and then fade away, sometimes everyday 2 or 3 times a day for weeks and then just disappear for a few months before coming back an d the process would start again. I couldn't figure out any pattern to it but sometimes it would happen when I was completely relaxed sat at home chilling but more often it would happen when I was anxious or under pressure. I seen doctors but it would never happen while I was with them. Like you I was sent to see a neurologist and then a phycologist ( 15 years ago )but with no diagnosis. Since then I've just lived with it.. So here I am 25 years after my 1st head shaking episode typing into TH-cam "involuntary head shaking" and I find your journal 😀 I thought I was the only person who's head would shake for no apparent reason . Because of your journals I can go to see my doctor and present him with a diagnosis. Thank you so much 😊
Hello! I am so happy you are here. Because of TH-cam I have been able to talk to hundreds of people with Dystonia. Initially, I thought I was alone too. When I started vlogging my tremors I couldnt find anything like what I experienced on the internet. But through talking to others I have found that the term "Dysontia" actually has many different causes. I have talked to people that have a pinched nerve because of posture, have tremors because of how they sleep, have genetic disposition that gave them dystonia, and the list goes on. Which is both refreshing and frustrating. It is frustrating because people are being mis-diagnosed with "dystonia" when in fact it is a pinched nerve, or muscle issue, or something else.
But it is refreshing because that means there are multiple avenues to pursue for treatment; acupressure (is what works for me), acupuncture, physical therapy (also what I use), chiropactor, medication, botox, DBS Deep Brain Stimulation surgery, Relaxation techniques, Stretching, Posture correction.
Life With Us thanks for getting back to me. If your reaching out to hundreds then I'm guessing your also helping a lot of people take the first step in getting the correct help rather than neurologists and phycologists . I'd never seen anyone else with the symptoms and doctors couldn't diagnose it so I put it down to my "mis-spent youth"😜.
I've started making a vid diary for when I go see my doctor about it so he can actually see it happening. I'm also keeping a sort of diary as to the things that set it off although sometimes I can be just sat relaxing watching tv on my lonesome and it starts for what seems like no reason. Other times are crowded small spaces, meeting new people, crowds, sudden loud noises, eye to eye contact, confrontational situations, tiredness, alcohol, when I get upset, people sitting or standing behind me, sometimes just the thought of having to go somewhere public like a restaurant or supermarket will set it off. This can go on for weeks/months and then stop and I'm able to go about normal life but always with the fear it will kick off again that day. Then it does kick off and the process starts over. I really think it's an anxiety thing for me although that alone does not explain how it comes and goes randomly, some months not happening and other months numerous episodes per day and it doesn't explain how it can start when I'm relaxed . Mine is very similar to yours but where is yours is a tremor mine is more like a uncontrollable tick and a fair bit more noticeable than yours.
I haven't made a doctors appointment yet but I do have a physiotherapist appointment soon for a unrelated complaint. Do you think it's worth mentioning it to her ??.. thanks 👍
I absolutely would bring it up. Worst case scenario is they cant help. But what if they are able to incorporate acupressure, or physical therapy into your treatment? Keep us all posted. It is very encouraging for all of us to hear how others are doing
Life With Us had my physio appointment on Thursday. I brought up my Dystonia to the physiotherapist , showed her a vid on my phone of it in action . She has never treated it and only ever seen it once before in a young lady who is being treated with botox injections. I asked about acupressure treatment and met with a confused look from her as she told me the only treatment she was aware of for dystonia was botox. I was also told that I would need a doctors referral before she could look into acupressure treatment and if that was something that may be beneficial for me.... basically I got fobbed off, again. I have now made an appointment to see my doctor in 2 weeks. I'll let you know how it goes... wish me luck 😎
Mik Finders Keepers I think it is great that you are staying proactive, and taking your health into got own hands. Please keep is all posted, and I will be praying for your progress!
I have found the solution to this problem, at least it has worked for me. I will try to be as brief as possible and get to the point. What has worked for me is, first, to solve hypoglycemia (low blood sugar), which already generates anxiety, tremors, and the body goes into a state of survival. Second, yoga exercises (I do the cobra pose and the cat-cow pose) and after doing those exercises do the plank exercise, all this in the morning and at night before bed. And third, improve and take care of your posture, keep that in mind. By doing 1 of these you will notice a great change in your tremors, but if you do all 3 together they will completely disappear.
Hi, I'm glad I found your comment. I will try this. How long did it takes for you to completely remove the tremor?
@@imagenia8016 No, this thought must unfortunately be eliminated, there is no estimated time, the time will be what it has to be, it will vary from person to person. Thinking about time will only generate more anxiety and therefore more tremors, and we don't want to be more accelerated and impatient that we already are. In my case the tremors disappeared after 1 month and a half, to this day I'm still quite disciplined following these 3 things, they make me feel very good. I advise you to pay close attention to what you eat and drink, avoid simple carbs and, if possible, caffeine, and eat less carbohydrates in general, eat more protein meals, don't skip meals, and have a fixed eating time.
@@gaahhwerderff3293 ok, thanks for your advices. My tremor started 9 years ago, just like that, when I was walking on the street. Whenever I bend my back and do an up and down mouvement on my head, my back neck start to shake. Also in public place like in a meeting, I'm afraid to turn my head left and right because I have that feeling that someone look at me. I don't think I have social phobia though, I was feeling good in a public place walking in a row of crowd on my left and on my right before I got this problem. Now I'm thinking about the hard time I would go when I would get married and enter the church and see all the people look at me. Sorry for that little story. But yeah, I hope I will get better and better soon 😊
@@imagenia8016Oh man, the same thing happened to me, on the street, in a meeting with people eating or just a meeting, I could not even drink water in such a situation, my head would start to shake and I would hear that strange noise in my head. It is Social Anxiety, I have had it for 11 years, even when I am on the street people overwhelm me to the point where I start crying, I cannot bear it, it is horrible. The best thing is to face these situations whenever you can until you lose your fear, the more we avoid them the worse it is, but when you face them you feel very good, the fear dissipates little by little.
@@imagenia8016 Oh brother, I almost forgot, try to take rest every so often, don't overdo it, it doesn't have to be every day. And remember the electrolyte balance, the level of electrolytes drops when we exercise and even when we are stressed, and the muscles may not relax and we may experience spasms and anxiety.
Your physical therapist seems great. I wish I could have an appointment with her
Allô 😊
Je suis heureuse de te revoir 😊
j'ai compris un peu se que tu disait juste si tu veut faire les sous titres en français sa serait super 😊 sa l'air vraiment trop intéressant merci beaucoup 💕
joane G salut! Je vais essayer d'obtenir des sous-titres en français dès que possible 😁
Life With Us okkkk 😊 merci
beaucoup xx 😊
Oh my God my son who's 10 years old has been suffering from that for a year and I keep taking him to the doctor and they keep telling me it's nothing that's just a nervous tick but now I think this man helped me I'm going to look it up and take it to his doctor and see what's going on
I have the same symptoms of dystonia, it really made my life hard especially when i have meeting or presentation or even in crowded place like banks stores, sometimes i can't think or I can't sort things out even take out anything from the pocket, but it happens always when i get kind of anxiety situation, and yes i have same issue(left shoulder is upper than the right) and i think prbly its the main cause i only hope i gets better because its really annoying and embrassing, bc i wasn't like this before im 18 now and it started like 2 or 3 years ago it just happens randomly smtimes i have anxiety but no tremors or shaking or anything.
but thx for sharing your story cuz i have same symptoms with you.
Oh god . Today was my first time experiencing something like this when my crush sat next to me. I had this for an hour. And later in the day i had another episode of it. I don't know what to do
Thanks so much for your videos. Yours is the first I have found that matches my symptoms most accurately. Definately find the symptoms worse when I am stressed or tired. This head shaking has been happening for over a year and am just waiting for the neurologist appointment. I did have a sports concussion and wiplash which I always wonder if that triggered any of it or if it is just mainly stress related. I am new to your videos so may have missed something but have you found anything that is working for you to ease your symptoms?
Trish, I'm sorry I am so late in replying to this. I have created a Dystonia playlist that includes all of the physical therapy exercises I have done, as well as step-by-step how I did acupressure. Here is the full playlist: th-cam.com/play/PLUyFkmdDIsozFMFaRXVmwqOUlDVlh7Rxh.html
Dystonia includes symptoms such as muscle rigidity and eye deviations so your neck being tense and out wack and nystagmus could all be related or aggregated by your dystonia for sure
I’ve had this but it’s cured now hope your well.
I don’t know if I have this exactly but I have my wedding coming up in September and I honestly have been dreading it because my head shakes uncontrollably when I get my makeup done, or eyelash extensions or eyebrow waxing (pretty much anything) to do with my face. It doesn’t shake constantly it comes and goes and it’s ONLY when I’m anxious. It will never shake at home or with loved ones. I have been working on it but it’s so hard and I think I just need to learn to accept it but it’s such a hard thing to accept forever...
Same. I cant get my hair done or eye lash extensions 😫
It is so nice to know that I am not alone! I was diagnosed with cervical dystonia a couple of weeks ago. Thank you so much for your ideas ie., physical therapy. I am trying the tension bands you have shown and it has helped immensely! My neck feels so much better afterwards. I do those exercises every night
Sara Glenboski you are definitely not alone 😁 I have found much support in the dystonia community here on TH-cam.
you are looking pretty and about dystonia Don't worry it'll go away.
When?
It does not go away. You may go into remission as I did, but trust me, it returns...
Unfortunately it doesn't really go away
@@jonnelledelossantos4226 well then let's hope and pray for miracle
Thanks for these videos. I’ve experienced head tremors for about 20 years and was told about 10 years ago that it was essential tremor. But when meeting with my new primary care doctor yesterday (showing her that I have no tremors when turning my head to the right, but having noticeable tremors and limited range of motion when facing left), she informed me that I likely have cervical dystopia. Getting an evaluation by a neurologist in three weeks. Keep up the great work.
That can feel so frustrating to have a physician guess, only to be told later that your initial diagnosis was wrong. Please keep us posted! And thank you so much for commenting!
Yes to all your questions and I thought the same with my back pack. I have limited motion like yourself and the eye stuttering
Have you found anything that helps? 🙂
Life With Us I found Botox helps. It is just starting to wear off now as I'm feeling tightness like a band shooting up at the back my neck on the side that I get injections in the shoulder.the shoulder on the left is like a stabbing pain constant without it.my right side is lower. I find training helps my mind but when I get to the stage where the Botox is wearing off the training becomes really hindered and I'm in agony all through my body trying to compensate. they said just to keep doing what I'm doing. I will prob struggle again on the next injection with training as I'll have to adjust my workouts and compensate new muscles again hope that makes sense. I know when I am pushing myself to hard or have done enough... my left eye twitches on the side I get Botox in the shoulder. The right side where my head twists my jaw is all off balance and I hate how my face looks on that side with it. Like my face has melted. I think you just have to try not stress or you make matters worse.but I feel I'm getting there. Depression gets me at times and IV always had a seasonal depression. I think this is prob the cause of this for years. Like you...I thought it's me it's not dystonia. I still try say Iv not got this even when neuro says I have.hearing you is like everything in my head coming out.x
Thank you for your video!! I will look at your other ones soon. I have slowly progressive dystonia since childhood in my arms, legs, and torso. But, in the last few days, I have spasms of the head, jaw, shoulder, and throat. I'm concerned it may be dystonia. But, prior to this, I had severe BPPV (crystals in both ears with nystagmus)!! It was HORRIBLE!! It took 5 weeks of physical therapy and over 100 Epley maneuvers to stop spinning with nystagmus! Right now, I just feel floaty while my head, neck and face on the right side is being PULLED!! My head is not twisted, but the pulling and muscle spasms come in waves. I'm afraid I'll lose some ability to swallow. Thanks!!
galiagoze thank you so much for sharing!!! I wonder what the correlation is? And why "bppv" is so popular, when it's listed as being "rare" 🤔 makes me wonder
Life With Us Hello!! I don't think BPPV is what you would call rare, but the type i had was BPPV bilateral in which both ears at the same time are affected. Mine was very, very severe! I have yet to find out if I have developed cervical dystonia. I might have a myofascial syndrome caused by excessive stress. I'll keep you posted!!! Love your channel!!! Thank you!!
Life With Us I think I will keep a type of diary to see what happened prior to the spasms...where I was, time of day, was I chewing, body position, anxiety levels, etc. I will also note all that was going on as the spasms subsided too!
I LOVE that idea!!! That could be so incredibly helpful in diagnosing your triggers and what helps! What a great idea. Please keep us posted
I just found you because my head has begun to shake? How were you diagnosed? What causes the dystopia? Why?
Thank you for any information. I have made an appointment to see a doctor. But your symptoms sound like what I’m experiencing. Slight head movement side to side.
Thank you, Mara
Thank you for sharing your journey. I also have cervical dystonia. I was 30 and now I’m 50. Was miss diagnosed. Up until a year ago. Going thru. The same as you. I have not tried physical therapy but I will be asking my dr about that. Thanks for the tips. Keep up the good work. I appreciate your videos. Thank you.
I am so sorry you are going through this. I definitely advocate trying EVERYTHING. Like you said, doctors get it wrong. It happens all the time. If I had settled with the botox I would have never bother trying physical therapy. It is cheaper, last longer, and is less invasive.
Please keep me updated with your progress. We are all rooting for your success!
I had the christal issue twice and the treatment with the lying down your head and turn helps immediatly.. It has not come back for years now so I dont worry about it.. I also have one higher shoulder.. I think the body tries to cope and compensate here and there the result of body posture problems.. Starting in lower areas like hip or lower back. I have an appointment planned with the chiropractor next week to hopefully discover some body parts that need manipulation with the goal to experience less dystonia symptons.. I also discovered dancing is benificial for me.
I think you are absolutely right. I think the issues likely stem from one area and when it wasnt correct it started a cascade of other issues. I have a hip rotation, one hip is much higher and rotated forward. It throws my entire posture off. Let me know how the chiropractor visit goes! My first visit I was so relieved, but the 2 days after were intense pain. Take it easy afterwards, drink a lot of water, and anti-inflammatories.
Mine gets worse when I'm anxious.
It's really embarrassing, especially in class.
I cannot concentrate in class.
And when ever my head does shake in a sharp movement, I always want to run out of the classroom.
I wish it went away.
But you know ¯\_(ツ)_/¯
You're not alone. I remember when I was in 3rd grade. I was able to sit still so well. Now that I'm in 8th grade, I can't sit still at all. My head moves by itself. I cant control it and it hurts.
Me too but it's ok
I have this everywhere I go my head shakes and I want to run e never get out anymore because of it, its so bad can anyone give a sugestion of remedy or supplement anything please sometimes I want to die because of this severe social anxiety
wow hella amount of mistakes, but i hope you got the point of it i know it's hard just train your brain to be calm and read books belive me it helps (:
Atlas orthogonal may help if it stems from cervical bone issue.
My wife has this issue of her head shaking also , hopefully her doctor can figure it out , she has an appointment tomorrow . This does make sense to me now .
hey what has worked for you to stop the head shaking? i know its the neck and back muscles spasming. i recently got botox, it hasnt worked. accupuntcure? im desperate for some reduction of the head movements. hope you have improved. xo
penelope May thank you for your comment. And I'm sorry you are dealing with this 🙁 for me physical therapy and acupressure helps. My physical therapist "reset" the shaking muscle by using acupressure. Heres the video,
th-cam.com/video/v82zWVP6CZE/w-d-xo.html
I have lived with both of these since I was a child. My mother took me to many doctors and they said I was making it up. Now I'm almost 28 and just found out whats going on and be able to deal with it the way I need to
Rebecca, I am SO sorry you were treated that way. My first doctor told me I was making it up too. When I asked for a referral to a movement disorder specialist, he said the only way he would give me a referral is if I cleared a psychological evaluation.
Extremely embarrassing, and degrading.
I suffer from the same thing and I was scared that it was something like mild Parkinson’s, I also have a pinch nerve in my left shoulder.. that I thought was the culprit I also get teeth chattering like shakiness it’s mostly in my head sometimes down my armpits to calm it down I stared taking magnesium calm, fish oil a blend called liquid bliss passionflower and Damiana it seemed to help also deep meditation and visualization to calm the mind.. I also have tinnitus (ear ringing) on my left side with the pinch nerve it was interesting you mentioned about the ear crystals because sometimes I get dizzy so I don’t know if there all connected
when you say "spasms" is this a painful feeling or does it feel like cramping? just wondering because I have an involuntary movement but I don't feel anything out of the ordinary.
matt hale thank you for your question! Mine feel like a stiff neck, and as it moves it cramps up
Thanks Si Much.
I unconsciously shake my head sideways whenever I talk. I don't know why its happening. I tried to video myself while talking and I just realized how weird it is. Its so cringed-worthy especially to me. Please tell me if this is dystonia 😔
Same
I did the same i recorded myself and I think I look so silly. Its embarrassing when your mates want a photo and my head just shaking and all my mates r normal, I feel like a freak
No idea what cervical dystonia is but I'm going to look it up. I have all these symptoms and scoliosis. I'm being tested for MS though as my tremor involves the entire right hand side of my body. I can't look left, have higher shoulder right, and the eye shaking in right.
Hi, I have cervical dystonia, my middle son has essential hand tremor, and my youngest has infantile nystagmus. I noticed that my my youngest with nystagmus has recently at 15 yrs old started picking up a slight head tremor. Not sure if he's trying to compensate for the nystagmus but it is worrying me.
You are beautiful!
Hi, I have all three, CD (tremor to the left), Nystagmus and a dropped R shoulder. My Tremor and Nystagmus is markedly improved through Brain training for the CD and prescription glasses for the Nystagmus. I presume the shoulder drop is more of a mechanical issue RSI ?
Christina, Thats incredible! I didnt know that glasses could help with the nystagmus. My eye doctor kind of gave me a shrug and sent me on my way. I'll have to check in to that. As far as the shoulder drop, I look at it from the other perspective. Its not a drop, its a raised shoulder caused by tight muscles/bad posture/etc. I think mine started from college. I had about 30lbs of books in my backpack every day, and I slung my bag over my right shoulder every day. After time I naturally had a higher shoulder.
. I came across your video after looking up my symptoms on google ... not the best choice. But I’m 22, about a month ago I stared to get weird shaking of my head (side to side) I could be looking at someone and it will randomly start to kinda wobble back and forth. It never really happens when I’m laying down, and I have no movement of the eyes. Usually if my head is still it could randomly start to do it. I’m not sure if this is stemming from my neck, or what I should do. It’s giving me anxiety, and I’ve had anxiety all my life. Do you think I should contact my doctor? And any help on what this might be would be appreciated. 😌
I am not the youtube owner here but you should absolutely see a neurologist that specializes in movement disorders, in particularly dystonia. Dystonia will really aggravate anxiety issues and cause it as well. I can say a regular doctor might be able to assist but if you do indeed have dystonia then you need a specialist in that field to look at you.
Im pretty sure i have this because my neck does this when im in school and i get embarrassed and all my friends tell me and i just wanna cry honestly
Faith Kriebel I'm so sorry you are experiencing this 💕 don't give up! You are among friends here. There is so much encouragement and support to be found on dystonia through Facebook, Instagram and TH-cam. What treatments have you tried so far?
Life With Us i havent done anything about it yet but i think i am going to a doctor tomorrow to talk about it. And thanks for the support❤
Faith Kriebel that is good news because it means there are a ton of treatments that might work for you! The treatments I have heard of so far are: acupuncture, physical therapy, acupressure (like acupuncture but without needles), medications (these usually make you very sleepy), chiropractor, botox, and lastly surgery (for really extreme cases).
For me, I've been doing acupressure with my physical therapist, and as you can see it is working amazing for me. Keep me posted about your appointment tomorrow 😁
Life With Us the doctor said that i just have a really big not in my neck and it starts to get tight when i have anxiety so thats what causes the shaking. Right now im just using heating pads and taking pain relief pills
Faith Kriebel how do you feel about that diagnosis? Do you feel like the doctor is accurate?
Hello, I'm 17 years old and I experience my head shaking everytime I try to focus and I can't move my head left and right. It gets worse when I'm nervous. Is dystonia harmful?
Thank you so much for your comment. The action of head shaking is not harmful, although it can become painful. However in very very rare cases head shaking can be a symptom of something bigger. It's a good idea to have a doctor make sure that it's nothing more serious.
Mam I also having that head shaking whats the reason for that if its always disturbing me. I can't talk with eny body because they ask me why your head is shaking like that and I want to treatment for this plz mam
I am so sorry you are going through this. How long have you bee dealing with this? I have found several different things that help including stretches, relaxation techniques, botox, physical therapy, acupuncture, and acupressure. There are also medications called benzodiazipeans, and a type of surgery called DBS
Ganja piya tha kya?
@@lakesideartists5234 meaning
@@rascakos5943 smoked weed?
Happened for me recently,, I don't feel it that my head shaking,, only my sister noticing why my head shaking just few seconds,,,, makes me worried 😞
I have both these symptoms... My head shake in vertical direction so slowly that i dont notice much but people keep asking about why you moving your head ...its so embarrassing... And some times i just break down....my eyes also moves ...when i try to concentrate on something ....i cant see properly when that happens ... If there is something which helps please help
I too have had the head shakes for 10 years. Mine started at age 40. First diagnosed as anxiety, then essential tremor, then cervical dystonia for the last 5 years. First set of botox helped most of the shaking. I have also had the similar symptom of having limited motion in my left to right turning of the head. For me, 2 years ago I couldn't turn all the way left, and not I am limited to the right. I am assuming it varies depending on the botox injection sites. Mine originally began as a constant tremor, and now it is almost like an irregular spasm. I have improved with regular exercise and healthy diet. 5 years ago it was so bad, that I was on disability. I first had to wean off the 3 mg a day of Xanax , that the doctor prescribed like candy. Then I would self medicate with alcohol to stop the shakes. Not a wise choice, since I would get worse tremors for days. I know alcohol abuse can cause brain damage. I believe I have this illness for a reason. Just not sure what that is ? Don`t feel alone, you are helping others cope with their illness. Thanks for sharing your vlogs !!
Paul PLANT Thank you so much for sharing! It really upsets me that doctors prescribe the highly addictive pills without taking close consideration and care of their patent. The same is here in Oregon. For the last several years doctors would prescribe opiates to anyone for anything. Consequently there was a huge addiction epidemic. It became so bad that now you can go in with a broken hand and get refused any sort of pain reliever (actually happened to my brother). And my husband had his tooth pulled and asked the dentist for pain relievers and ended up getting a lecture on why Tylenol should do fine 😫
Hello and thanks for listening. I hate the meds. I am curious if you are getting botox injections ? I find that this will allow myself time to heal. I am trying to lift my head up high, and think positive . There are to many negatives that can trigger these tremors. A lot of people deal with this disorder, and perhaps, some past traumatic events. I can`t change the past, but I can only have an effect on my future. Just as a stroke patient can recover, I chose to believe that it is possible to also overcome these tremors.
Paul PLANT I haven't done the botox. What helped me the most was acupressure from my physical therapist. Definitely do NOT give up hope! Not ever. Us bringing attention to the cause will help the advancement of medical professionals maybe finding a cure. And in the mean time we can all encourage each other, and support each other .
Don`t let the botox injections deter you. It has been so regular for me, that when I go in, It feels like acupuncture. I get instant relief, and don`t need meds. The meds cause depression, then anxiety when I try to wean off the garbage. I don`t agree with the idea that this is a progressive illness.
Paul PLANT I agree with you. I think the benzos are just to cover the symptoms, not treat the issue- which causes more problems in the long run
I am now dealing with this! My head shakes back and forth and pulls to the left. The tenseness is on the right side of my neck and some pain in my right shoulder blade. I have eye twitching or random pain once and in while. What I notice is ear sensitivity and pain in my right ear(or buzzing sound and muted sound) and I sometimes get vertigo. Leaning backward(while even laying down) I get dizzy! Im so over it.
I get shaking in my neck really bad, and the doc said I had Dystonia, and that is was all in my head. I also feel really dizzy and ,light headed, to were I could hardly walk. I fell a few times. The docs looked in my ears and said i was fine. I do not have an ear problem, according to my doctors. I shake really bad, and they tell me it is all in my head, like, ok.
You have the exact same problem as me! The doctors hasn't found what it is yet. My head is shaking constantly, enough to make me less self-confident.
It's hard for me to look to the right, and my one shoulder is higher up than the other. I am going to school and it's very hard for me because I feel that all the others are watching my head shake. When I am nervous my head starts shaking more.
I don't want to live with this for the rest of my life, so I am trying to make it less "shaky". It's hard to do social things with this problem.
Do you do any exercises? And how do you make the head less shaky?
keyB thank you so much for your commenting. It's very brave of you to share your experience. The thing that helped me the most was the acupressure. It instantly made me 85% better. I still needed to have it done every week, then once every few weeks, now it's once every 6+ months.
My physical therapist was able to feel around on my neck and locate the exact muscle that was spasming. She very firmly pressed down, and held it for about 10 minutes. She described this as "resetting the muscle".
I won't lie, it really hurt at first, but gradually near the ten minute mark it stopped hurting.
When she was done my neck spasms were no longer as bad.
Yoga & Meditation help a lot 🙏
Its been while since you posted this. Just wondering how you are doing now?
Question when you read a book right does your head shake to cuz i have that when everytime i read my head shakes and tics
Hi, I think I may have Dystonia in between my shoulder blades because I am always moving my right shoulder and sort of scrunching this area, shrugging it uncontrollably. This is a very small remnant of how bad it became in 2016/2017. It was my neck too but I did Corrective Chiropractic, and the neck part of it went away, now it's mostly my right shoulder that wants to move when I just don't want it to. It was constant but now it's down to once or twice a minute. It turned out that I had "Millitary Neck" which is a straightened out neck with no curve in it. This is bad for a variety of reasons, it's supposed to be curved, and if discovered, should be curved out again by a knowlegable chiropractor. I also couldn't turn my head far enough to the right or left, and my brachial plexus bones and upper back muscles were out of place and imbalanced. I did the Corrective Chiro for about 10 months to solve these issues, then went to Physical Therapy and I have been in PT for about 4 months. My Aunt in Finland has Dystonia and receives the Botox for it. I think a lot of Scandinavians get it. You look Scandinavian. Have you seen the Ted talk about the dancing cure for Dystonia? I'll link it. That guy also sounds like a Scandinavian. I am nearly normal now and I did it all through Corrective Chiropractic and Physical Therapy. After seeing the TED talk about dance therapy, I've decided to go back to Ballet and other types of dance classes for it as well. Dr John Bergman who has tons of videos like this says that any condition like this can be solved by eating a mostly organic plant based diet, a little meat or animal products are optional, and getting fresh air, sunlight and exercising. Remove chemical, physical and emotional stress. It worked for me, most of my problems went away including the neck which was a huge issue for me as well. I didn't realize i could have Dystonia until today when my physical therapist suggested I visit a neurologist. Check out this great TED talk about it, I'm so grateful for the internet when things like this get dropped on me. Ironically, I had already worked my way most of the way through it. I'm glad to see from your later videos that you have resolved it almost completely :)
Oh by the way, have you checked your iron level? My iron was rock bottom and I was anemic but didn't know it. I had to take iron supplements for 6 months. Now that my level is going up, my symptoms are greatly lessened. I know that low iron causes Restless Leg Syndrome which is a movement disorder, so most likely it can also cause Dystonia as well. Check your iron and if it's low, get it back up to a normal level, in order to help your healing.
I love you ash.
Yes, I have the same thing. my right shoulder is higher than the other, limited range of motion. I started Botox two weeks ago, meet with a neuromuscular deep tissue therapist and a chiro once a week. I pull hard to the left. It's awful.
It is hard for me to change motions but my neck is fused. 3 plates and 10 screws. I have not noticed my skin being over sensitive. it hurts real bad to lay on my back because the pain in the base of my skull. my ear is ringing so much today.
my head does not seem to shake, it just does not want to stay up. I have to wear a brace. I can't look in one place very long. It's like holding up a big bowling ball on a toothpick!
Gina Steele oh my goodness! what happened? did you have an injury that caused this?
I'm a 26 year old man. My head shakes most of the time as well even when I'm alone in the kitchen and drink water, my head will shake when I tilt it up to drink and it will also move to the side. Also my bottom jaw shakes during stress or intense moments or occasions unless I clench my teeth together. Its sucks knowing that I'm trying to live a normal life as possible especially when I want to pursue a career that will have me talk in front of people, customers or go out and be social with co workers.
I am so, so sorry that you are going through this. I have had several people say that their cervical Dystonia was caused by TMJ. If you are having shaking in your jaw it would definitely be worth asking your doctor about
Thanks for responding. I appreciate the help and support from you!
that's what I exactly feel
hello, I am from Phillipines, i am suffering now some sort of head shaking and i really cant control it, though it shakes a little bit everytime, other than that, there is nothing more, how am i suppose to cure this head shaking m? it started only this past few months. thank you
I have this all the time and once my hand goes up
i got this when i was seeing a hair which was white and somthing top of my head something happened and it came to my neck suddenly my neck start jerking to right...and it has been reduced very much BUT still MY NECK BONE JERKS...what could it be
My head suddenly will turn slightly to the left just randomly. I am so terrified it could be Parkinsons. Had this problem for many years now. Used to think it was from too much caffeine. Good to hear I’m not the only one and it may not be Parkinson.
Hello,
I am contacting from DMRFC (Dystonia Medical Research Foundation Canada) based in Canada. The mission of the DMRFC is to advance research for more treatments and ultimately a cure; to promote awareness and education; and to support the needs and well being of affected individuals and families.
Currently, we have about 2-4 videos of individuals suffering from dystonia under 'patient stories' on our channel. If we have your permission, we would like to re-post your video on our TH-cam channel.
We are sorry that you have to go through the pain! The Dystonia Foundation is doing the best they can to build more awareness about the disorder, and your video can definitely help them.
Thank you for your time
Regards,
DMRF Canada
Absolutely! My entire purpose in starting this channel was to raise awareness, be a sounding board, and to develop a community of those who suffer from dystonia. I love that we can all share what works, what doesn't. I would be honored to contribute in any way that I can. Thank you for all that you are doing!
hi can you feel it when it happens? I can't but i found if I lower my right shoulder it stops.
mscutiebum Followme I can feel it. I get motion sick fairly easy, so when the shaking is more frequent it makes me nauseated.
I'm 22 and from Poland. I also deal with head shakes. I haven't been to a doctor yet but it looks like dystonia. The shakes seem to be triggered by the awareness of being observed by other people. I also have social phobia which I feel developed mainly because of my shaking. I was trying to supress and hide it for a couple years now and I didn't even think once that it could be an illness. Instead I was always worrying that there is something wrong with me. I also have the thing with the shoulder and my spine is curved to the side to this shoulder a bit. For years I've had forward head posture without even realising it, I don't know if it's connected tho. That neck muscle of mine seems to be shorter and more contracted. And when I tighten my neck that muscle is shivering. I really hope it's something that's been caused by a trauma and I'll be able to heal that. I'm more and more capable of accepting that but it caused me a lot of pain and I isolated myself socially. You dont' have to apologize us for complaining. It's a shitty issue and you have all the right to feel bad about it and it doesn't make you a bad person. Thanks for those videos, it's really amazing that you raise awareness around this issue :)
Socially triggered tremor is apparently related to Essential Tremor more than Dystonia, could be worth looking into...
@@DainHedgpeth Since I wrote this comment I learned that I don't have ET nor dystonia but I have schizoid personality disorder due to perinatal injury and emotionally traumatizing childhood and my tics are on a nervous basis.
Thanks I thought I was the only one to the point it scares me because I've seen elderly people head shake uncontrollable and it's hard for me to get a haircut sometimes and embarrassing to me 😔😣 I have so much going on to be so young
I can relate to that. I didn't think I'd need to worry about this until I was like 60 or older. But it's not over! Like I said, there's so many treatment options available, there's bound to be at least one that gives you relief 🙂
Omg I've been suffering with this exact thing since the year 2000 when I first noticed it. No doctor has never been able to tell me exactly what it is they just said it was uncontrollable head tremors....
The botox never helped me unfortunately.
I dont know what else to do.... #Sad #Embarrased
Can you help my head started moving but only left side it moves it started 2 days ago it moves on its own what should i do?
I have moments when my world will tilt to the right or left like I'm on a ship and it pitches to port or starboard. Could be those crystals.
For me it started having light head tremors, and 3 years latter I started to feel pain on the neck, and now my nick is stiff and painfull everytime, this don't go away, and it makes my head shakes when I look at people and people look at me, my head shakes when I try to drink on a cup, when people put their fingers towards my direction to indicate something, and even worse my head shakes when I hear any loud noises, like drums, people screaming, something falling and hitting the ground making loud noises and my head starts shaking like crazy, like I'm going to be insane in the moment, somebody please help me, what can I do?
I am so, so sorry to hear you are suffering with this. One thing I recently learned about is called RSD (complex regional pain syndrome). This can CAUSE Dystonia. Research RSD and see if those symptoms sound like what you have. What helps me the most with my Dystonia (head shaking) is accupressure. There is one muscle in particular that always spasms. My physical therapist firmly presses down on that muscle, and holds it down for about 10 minutes. She said this action is like "resetting a muscle". When she's done the muscle is relaxed, and stops shaking.
I need to keep stretching and working out otherwise I get more head shaking. My head also will jerk off to the right out of the blue. I have limited range to my left as the muscle pulling my head to the right never relaxes. One shoulder is higher than the other for me (my left) nothing hangs even on my skinny shoulders. Botox did help a lot as before my head was locked to the right all the time..
I also suffering....nd it comes in anywhere ...realy bothers me
I think tht we automatically shake our head sometimes when the crystals are bothersome... Its like an instinctive body response, I rock when I'm standing I couldn't understand it but its basically the same response.
i have been trying to get some help and suggestion from you as i have 100% same problem like yours and its so difficult the doctor to recognise the problem and effected area
I'm sorry I am so late in replying to this. I have created a Dystonia playlist which includes all of the physical therapy exercises I have done, as well as step-by-step how I did acupressure. Here is the full playlist: th-cam.com/play/PLUyFkmdDIsozFMFaRXVmwqOUlDVlh7Rxh.html
I am 43 and my head shakes but it gets worse day by day
My co worker 4 yrs ago asked me Why is your head shaking and I shaked it off like no it isn't..It's hard to sleep cause when my head is on the pillow and my eyes closed my head shakes for 20 mins and than my eyes be shaking side to side..I am so embarrassed that I avoid taking pictures ..I can be calm and its ok but if stressed or in a crowd I feel it shaking..I don't know what to take but I have been using magnesium hoping that it would calm my nerves..The more I get older the worse it gets😢😢😢😢😢
Yes I have that too. I feel indeed my left side shoulder. Meditation and yoga help a lot. But it’s not 100% healing. Thanks for sharing 🙏
I have had CD since I was young - first realized in my 20‘s. My aunt had it so I’ve assumed it was genetic in my regards. I had 23andme done and I didn’t recall reading about it. There is a specific entry about dystonia? Pls respond - I need to find out about this. I have emailed 23andme to see if I was indeed tested for it. Thanks.And thank you for your videos. They give me hope. My shaking has partially ruined the life I knew before. I have other issues as well so not just the dystonia. Thank you again.
Good morning,
I'm so sorry you are experiencing this. If you have already done 23&me, download your "raw dna data".
There are a ton of free websites that offer additional dna information. All you need to do is upload your raw data and their website will interpret the results.
If I remember correctly, genetic genie gave me the Dystonia information.
genvue.geneticgenie.org/
Thank you for taking the time to respond to me. I will let you know ! Jane
@@LifeWithUs I uploaded it to genvue but it is hard to interpret. Did you specifically see Cervical Dystonia mentioned? Did someone interpret the findings for you? Thanks again, Jane
wow this is crazy I don't know if I have dystonia or not it's really confusing bc I have some similar symptoms but I don't know for sure like every once in a while it feels like there is a small earthquake going on but just with me its like my eyes are making the room shake it is subtle but I know it's going on it makes me feel like I'm crazy because my head doesn't shake like you all's but it's like I feel the room shaking but I do have to say this only happens every once in a while. I'm 17 and at times I have high blood pressure idk if that has anything to do with it but I do every so often. Oh and I have excruciating migraines, not all the time idk if this too ties in but yeah is this dystonia
You look pretty normal to me. Your head doesnt move
Thank you! Yes, I am managing my dystonia by seeing the physical therapist regularly. Initially, I needed to go in once a week for acupressure. My doctor explained that I can expect this to be a lifelong thing. But once I got it under control, I only need to go in every 3 to 6 months for physical therapy. But when it starts to return I make my appointment for accupressure.
Mam I have cervical dystonia. Tell him the treatment and some exercises, what can we do?
My neck has been twitching a lot lately for like a few months and my head keeps making random movements like
To the side, and I also noticed my eyes kinda shake and jerk around and I feel dizzy😭 and my right shoulder is higher !!
Wassup G, I am so sorry for my delay. Do you sling a bag or purse on one side? I noticed that made my shoulder height way worse. I stopped carrying my backpack and just put my wallet in my pocket instead.
Let me share everything I know so far. Firstly, I have compiled a playlist of all the videos I found helpful regarding dystonia (some are mine, and some aren't). th-cam.com/play/PLUyFkmdDIsozFMFaRXVmwqOUlDVlh7Rxh.html
Another great resource is a fairly new website, Its www.dystoniahelp.org/
The author of the website complied an incredible amount of knowledge of causes and treatments available for Dystonia.
I suffer from the same thing... I don't know how I can explain it because no one understands me it's crazy I swear.
yes my eyes are shaking in the night or when i wake up in middle of the night what is that????u have just dystonia or something else??
You may be experiencing Nystagmus. I have cervical dystonia, and very random nystagmus.
@@LifeWithUs dystonia and nystagums they was happened together or they are not related??
I also struggle to look to my right side my left side I have full motion but never feel relaxed looking to the right , I have to have people sit to the left of me so I feel relaxed to talk to them
This is a great column for cervical dystonia people
This is so devastating and isolating. I've had it 20 years. People stare, I can't work
Has anyone tried hypnosis, I've read it works, but I'm afraid. Someone please respond. Does physical therapy really work. Thank you.
Excessive head shakes and embarrassing shakey posture while having no confidence since 3 years please tell me easy solution
u are so Sweet!!!
Hello please help!
My neck is shaking, I have no pain or dizziness. When I panicked, for example, I was at the dentist and my neck started shaking, it lasted a few seconds, what should I do, please!
I'm sorry I am so late in replying to this. I have created a Dystonia playlist which includes all of the physical therapy exercises I have done, as well as step-by-step how I did acupressure. Here is the full playlist: th-cam.com/play/PLUyFkmdDIsozFMFaRXVmwqOUlDVlh7Rxh.html
Hi. My daughter seems to have Nystagmus. Her eyes can't stop going left and right and will only stop and focus if she look at the thing that she wanted to look at. She is now 3 years old. and my baby 4 months I notice he had his head shaking like when people feel cold they will be shaking right? I found this reaction on my baby boy few times. And his head is shaking too. and his eyes hasn't focus yet. still going left and right. i'm worried if it's nystagmus. i'm worried about both my kids 😭
Head shaking problem Solve best doctor
Sis I have same problem my head checking inside .botox is it help u?
Is your higher shoulder unbearably tight and pulled up and like hard fibrotic gristle?
[1 year later]
yes
Same thing is happened to me from shaking my head really fast and my nana told me it’s my muscles tightening up and she said use a heat pad on the spot it works a little but not all the way
Heat definitely helps to relax the muscles. I have found a few other things to be helpful too. I have created a Dystonia playlist which includes all of the physical therapy exercises I have done, as well as step-by-step how I did acupressure. Here is the full playlist: th-cam.com/play/PLUyFkmdDIsozFMFaRXVmwqOUlDVlh7Rxh.html
I have limited range of motion turning my head towards the right due to cervical Dystonia.
I have one shoulder then another, astigmatism shaky eyes, ... etc... left you messages on your last video.... check that.. it’s the scm muscles pulling the chest up on a side then another ... and also weak right hip ...
I suffer the same thing , it happened last year i am 30 years old ,the only difference is in my case the shaking gets stronger when I catch a flu and most of the time the shaking comes with emmmm it is not a headache it is like a back head pain it ruined my life.
I think I might have this, about a two weeks ago I notice my neck would shake slightly while I was playing my video game. Since then I’ve been feeling this weird twitchy feeling in my neck. My neck only seems to shake if my back is hunched or my shoulders are tensed. My doctors said it might be anxiety but this is the closest I’ve came to a video with almost the exact same symptoms as me. I’m still looking into what’s going on, hopefully I can get this fixed. I also wanted to know if there is any pain? Because I don’t feel any, only in my back. My biggest fear if it’s something wrong with my brain
Update?
@@CaylynTV they told me that it was dystonia
Yes i have this same problem
You need to see a chiropractor because you have a pinched nerve
Im going to see one soon because i have cervical dystopia and lower back problems
I head bobbing all the time! My bff try’s to help but it doesn’t work I wanna stop...
I am so sorry that you are going through this. Does your head shake left to right like mine? Does it seem to pull in one direction?
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My neurologist tells me the tremor is caused by the mis-firing of the neurons in the brain. Benzos do help. The shoulder raising is caused by the tightening of the sternocleidomastoid. I have had ST for over 30 years. Have done botox, myobloc injections, benzos, and DBS. The only relief is the benzos. I saw a dentist specializing in the TMJ treatment. Look into that. He claims one of the cranial nerves running thru a space in the back of the jaw compresses the nerve causing all of this. Unfortunately, since I've had DBS I can't have an MRI so was not able to get the appliance. But, I do notice when the ST and tremors really kick up, I let My jaw just completely relax, so my back teeth don't touch and it's instant relief. I realize now that I do clench my teeth and have thought about just getting a mouth guard, like worn in sports, to keep my jaw in a relaxed position. It's my only hope left. I am in then process of applying for disability. I'm a visiting nurse and driving is getting difficult, and I get anxious when I know patients are looking strangely at me or will ask why my head is shaking. Try letting your jaw, esp the back portion just completely fall open and relax, see if you notice a difference.