My cervical dystonia diagnosis story
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- เผยแพร่เมื่อ 13 ก.ย. 2016
- Today, I wanted to share how I got my "cervical dystonia" diagnosis. It was a several month battle, trying to convince my doctors that something was wrong, and it wasn't all in my head.
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Trying to talk to doctors about dystonia is the worst. I was hospitalized during a storm and was treated as a drug addict because they thought I was in benzo withdrawal. So they detoxed me while I was unconscious and sent me home a dysfunctional disaster.
Since then Im not able to control my symptoms at all. I’ve lost everything. And can’t take the same meds anymore, the rapid detox was pretty hard on my brain and now the drugs just exacerbate the symptoms. It sucks that doctors who are ignorant assume they know more than you and just make treatment harder.
Living with dystonia is so challenging. Thanks for sharing your story. Its people like you that share your story that bring me a lot of peace.
Bless you! I've never heard of this until today, but it sounds truly awful. A friend's husband has just been diagnosed and is fearful of his future. Thank you for being so honest and I really hope you're able to have something done to give you your life back. My heart and prayers go out to you, truly. ❤️ xx
So nice to find you you’re amazing. I’ve had cervical dystonia for 5-6 years, head shakes are similar to yours. Range of motion issues. My head rests to the right with right shoulder elevation. I did find neuro physiotherapist to be helpful as normal physio can excite the dystonic muscles and make symptoms worse. Was interesting to hear about the problem with stairs. I’ve had it where I just don’t take the next step and have to think about what I need to do before my legs will continue, as well as the brain fog and no clarity of thought. You have to make the best of what your given, although I know it can be difficult. Mine seems to have stabilised and my neurologist said after around 3-5 years it doesn’t tend to progress further. Good luck, I will continue to follow your journey. Big hugs, stay strong. Xx
Girl my heart goes out to you.. I to suffer from all the stuff you talk about. I was told different things by my doctors as well. My prayers are with you. I am so sorry you have to go through all of this. May we both find a miracle from God. I am Sending hugs and prayers your way.
Thank you so much for your comment. This is an old video, and I have since found my treatment. I have been going to a physical therapist, who uses acupressure on my neck. She felt around on my neck, and found the muscle that kept spasming, then she pressed down on it, and held it firmly for about ten minutes. She called this "resetting the muscle". We did this once a week for about a month, and my shaking was completely gone. Now when my shaking returns, I just make an appointment to go to physical therapy. (Which I only go in about every 3 to 6 months)
I have a shaky head too. Mine started in 2003 in my right hand. I was diagnosed with Essential Tremor. Since that time, I have it in my head and on occasion, my left hand shakes with tremor. Although it is not dystonia, it is very similar. Mine gets worse in public places or if I am stressed. I know I have to live with this because there is no cure. I too, have a deep faith in God. I cast my burdens upon him . I am learning to live with it. You are a lovely woman. I pray God gives you what you need to overcome and still find great contentment and peace in this beautiful world. May God’s grace and peace be with you.
I have had Cervical Dystonia and essential tremor all my life. And suffer from a lot of neck pain, which causes headaches sometimes. I had been to many specialist. When I went to a neurologist about 10 years ago she put my on a medication called, Premidone which is an anti convulsent. It has 90 % eliminated the tremor. I take it at night instead of in the morning before I go to bed so it won't make me drowsy the next day. I still have alot of pain on the left side of my neck, but limited shaking. I also had an MRI done of my brain to find out if there was any problems there. The neurologist told me I had Agenisis of the Corpus Collosum, Which means the Corpus Collosum which separates the two hemispheres of the brain is missing. Which explained alot of misdiagnosis of ADHD. I am also very high functioning. I would suggest you get an MRI of your brain.
At first when you said I have 2 kids I thought that's great, because I've always wanted at least one kid, but than realized how much harder it must be to be responsible for them with this disorder. I know where you are coming from and my next step is to find out if TMJ is causing my CD. I noticed the more active I am the more pain it causes me. If you check out my channel you will see that I get pretty active lol but after that I need a good nap. I wish you the best on this painful journey and hope you find the right treatment :)
Thank you for your comment. Yes, it is possible to have children with this. One thing I learned about was that sometimes dystonia is genetic. Not always, but it is a possibility. I have heard from several people that they were able to get a blood test confirming their dysotnia is genetic. However, all of the medical professionals that I have talked to said they know nothing about said test.
All of that being said, kids are amazingly resilient. How they view the world will come from you. My kids do not see me any differently. But this has allowed us to talk about differences, and how people have challenges. It has allowed them to see beyond the physical. Which is a beautiful thing.
Keep a log of your stress triggers, and caffeine intake. I noticed a HUGE correlation between stress, caffeine, and tremors.
Looking forward to your update!
Thank you so much for making this video! I can't describe the relief I felt to find someone going through the same kind of turmoil. I was just diagnosed with this in the past month. I am 38 years old. Depression, regret of not having made more of my time while I was healthy, anxiety for the future, and just having to deal with the involuntary movement all day long makes it incredibly hard to cope. Thank you again for sharing your experience. I dont feel quite as alone now.
Sophi Lumen thank you so much for your comment. You are not alone. I have talked to hundreds of people with dystonia on here, and on Instagram. There's a huge community of support just waiting for you 💕
I found your other video first and then found this one and I am literally crying. This is exactly how mine came on. The visual disturbance and then the head tremor coming more often. You have given me hope. and the depth thing I have that too.
Have you tried physical therapy? It is what has helped me the most
You are not alone. I too suffer from dystonia mine is Dopa Responsive Dystonia (DRD), when mine first started it was similar to yours. I regressed and went through many changes since and finally was diagnosed last November by which point I got really bad. I take levadopa as mine is caused by my body no longer producing dopamine, and thanks to it I can have some normality.
I like yourself have had my ups and downs but after getting past the depression and anger, I generally laugh at it all the time. keep your head up; smile and laugh with your kids. One thing about dystonia is it makes you appreciate everything so much more if you look beyond your body and view the world as your 2 year old does. If you are noticing its getting worse then start doing all the things you always wanted to do (a bucket list if you will) make the memories now just in case the dystonia prevents them from happening later. Enjoy life, never let it get you down. Is dystonia a pain, yes, but you can't let it win.
Shawn Fairchild Since getting better I actually have started a bucket list. I have a very hard time leaving my house, but I feel like I'm being blessed with the opportunity to be more active. Who knows how long this will last.
How did you find that your dystonia wss dopa related? I asked my doctors about it and they didn't have a clue what I was talking about.
Shawn Fairchild sorry, i meant "dopa responsive"
It was on a total fluke actually like you I had neurologist telling me
all the things it wasn't then I was sent by my neurologist to another
who said it was a motor skills disorder and she would send me to have
physio therapy and then on a whim she gave me a prescription for
Levocarb or Levadopa to see if it would help. The fact was that it was
or is very rare effecting 1 in 2,000,000 people usually women and
usually starting as a child I my symptoms started in my late 30's and
and I am a male, but I took the prescription and as it was new she had
me on half a pill 3 times a day just to see if it worked it nothing
changed after a week then I was to discontinue taking it as it it wasn't
that. ( oh and she didn't say what that was) I took my first half pill
the next morning and within about 45 minute to an hour I had no more
symptoms in my left side except my leg and walking my arm neck and head
and speech and face were all back to normal and I was able to stand up
straight and raise my arm above my head something I hadn't been able to
get even as high as my shoulder without a lot off effort for about 3-4
years and had my shoulders at the same height. I like you did not have
MS or cerebral palsy or other things. That's how i found out I was dopa
responsive dystonia.
I was really cruel to my mom after though because once it started to work I was over joyed almost to tears, but I went down stairs and faked the symptoms and exaggerated them so I looked even worse and told my mother that I didn't think the pill worked and she saw me and said I shouldn't take anymore then I grabbed her tablet stood up strait held it up in all sorts of directions my arm could go in and watched her jaw drop and she began to tear up because it was such an amazing change. There are no noticeable side effects that I see and the dystonia is still there its just like this is a band-aid hiding it but it allows me to be normal or at least way more normal than when I push myself to much or I trigger it and the levadopa can't get the signals back up again running normally or as I call it a system crash; and when I crash I crash hard everything goes haywire well at least the left side. I usually try to sit down or get to my room as sometimes Oi will pass out be it for a few minutes or hours, but that was happening before the pill so not a side effect of the pill more another one of my symptoms when the pill isn't working. Luckily I rest and take another pill and bingo back to semblance of normality.
It took me 2 more weeks after seeing the neurologist who prescribed the pill to get her secretary to call me back to tell me what the pill was for and then another too months for her to see me to see how well it worked. My prescription was only a months worth and after the first week I was supposed to increase to a full pill 3 times a day, well after the first month I still hadn't heard from her and my family doctor was on vacation so I couldn't get my prescription renewed so I went a whole month with all my dystonia in full effect, and then got my new prescription which i will have to take for the rest of my life and will do happily because with out it I am a mess.
My first video I posted was the of me taking my pill after get my new prescription. I hadn't made a video before and as such had never seen what I looked like to others and when I saw it I was stunned because in my head I thought I was hiding it so well, and that nobody would notice. I thought I looked like i did in my second video after the pill took effect. WOW what a shocker!
I'm sorry for going off on a tangent or rambling so much. I'm not a doctor only a very frequent patient and sufferer, but from what I learned about dystonia in the past 10 months is that you should talk to your neurologist or family doctor and ask to try Levadopa if its not what i have then you have a different kind of dystonia and the pill won't make any difference if it is what I have then you will see a difference and it will be dramatic and noticeable fast, most times in the first day to the first week at the most if nothing then no harm done stop taking the pill because it isn't helping.
I like you knew nothing about what was going on just watched it getting worse and as the pill doesn't last 24 hours i am reminded every night and morning that the dystonia is still there and there are new symptoms all the time. (I can't stress this enough the pill is not a cure just a band-aid) I have lost nerve sensation on my face my left side doesn't send any pain signals anymore (a slight blessing as this would be very painful I imagine otherwise) my left arm likes to curl up like a cat on my chest and the rest is in my youtube videos.
Sorry for writing a novel here, but you asked and well i don't really get a lot of people to talk to about this. I hope this mini novella answered the question and gave you a smile or 2. I'm glad to here you have your own bucket list I went through my first and am slowing working on list 2 of even more things i want to do this time with the pill in effect. I started horseback riding as one of the things on my list before the pill and am still doing it now I find being around the horses very therapeutic even if afterwards my system might go into crash mode from the over stimulation its always worth it and makes me smile. At the end of the week I am going to travel to Montreal and then to Alberta as part of bucket list #2 and traveling on my own being one of the things, after that I will start making plans like getting a new passport to travel internationally.
Keep a smile on your face and joy in your hart and laugh at it all because you can never let it win.
@@shawnfairchild5538how are you doing now many years later ? I have what seems like dystonia my head pulls to one side while walking and my head bobbles and shakes internally of sorts progressed rather fast for me also have involuntary movements - jerks/tics/twitches that come and go . This has definitely gotten me very depressed lately still awaiting my diagnosis see my movement specialist again in a month after initially telling me she only suspected FND smh , anyhow long story short how are you doing now 7 years later ? Is the levadopa still helping? Has your dystonia gotten worse ? . I suspect medication withdrawal side effects of sorts to be a contributing cause to my situation my primary doctor was terrible had me on all sorts of meds for 2 years from Lexapro ( ssri ) I took for 9 months , to diabetic med metformin and fenofibrate to anti histamine and neuroleptic for dizzyness and vestibular migraines I bought in and took whatever she gave me smh 😢.
Dystonia is a so difficult to deal with and I truly feel your pain. I was diagnosed with Cervical Dystonia Spasmodic Torticollis like you, when I was 40 years old, I'm now 71. Also like you, it took doctors about a year to diagnose me correctly. For me however I have Dystonia in my family history. We believe my great grandmother had it and my aunt on my fathers side also has it. You may want to check your family history as well.
Over the years I have tried various treatments but mostly I endure the discomfort and pain. Unfortunately Dystonia is for life and there is no cure. Dystonia also affects us all differently. Mine was much worse 25 or 30 years ago and has gotten somewhat better, to the point I can live with it. I recently have been taking CBD oil which has provided some relief. People always say to me "how can you live with all that pain every day" and I always tell them, I don't have to look very hard to find someone else how has much much much more difficult than I do so I count my blessings everyday.
Don't lose hope, keep the faith and God Bless.
I love your outlook Larry. It is so humble. Depression is a tricky thing, it's always crouching and waiting for an opportunity to attack. I also believe that pain and depression go hand-in-hand. So it is amazing that you are able to have a positive outlook, and to be able to recognize that there are others out in the world that are less fortunate. I think that is truly amazing. Think of what a good example you are to those around you 💕
@@LifeWithUs Thank you so much for your kind words but I don't deserve them. I'm just like thousands of others like you and me fighting this terrible disease. Talking about it helps and having others share your pains and struggles is comforting. I wish you the best with your Dystonia journey. You are young, smart and compassionate so try to enjoys life, it's far to short.
Hi, thank you so much for your video blogs...I have CD but my journey has been quite different as mines due to neck trauma. I was incorrectly dx with MS after a severe neck injury left me with severe muscle spasms, tremors, partial paralysis and more horrible symptoms. I went through several batteries of tests two years apart and was eventually cleared of MS. After 10 years I received the CD dx and have since been on muscle relaxants, gabapentin and Botox injections. Without All of those treatments, I am virtually bedbound, crying from the pain and extremely depressed. I was recently referred to physical therapy when my symptoms worsened - dr was thinking epilepsy, but that was also cleared. The therapist made the most dramatic improvement over the other therapies. She also used the pressure points that you talk about in one of your other videos and once the muscles were released, I was able to start strengthening exercises. Its still really painful with days where the pain is off the charts but I have many days where my muscles just work and that is such a relief! Keep video blogging. One little comment can give someone else that one piece of missing information that can make a dramatic difference in their lives.
Hi, just found your channel! I have Cervical dystonia for 7 years almost, and found your channel looking for exercises recommended for people with cervical dystonia, at first noticed in your videos you didnt have any movement, and then here saw you have a small movement, well, mine compared is greater, i dont suffer pain, just neck tiring all day. I was operated last year with DBS which was fast, in the day and improved a lot my sympthoms, i will follow your channel! If you want to chat you can count on me, dystonia is hell in life, you have to adapt to it, and prevent situations that may worsen it, which is very hard. Really intrested in watching the exercices you were given, in 7 years, i couldnt find a good ways to look for self treatments.
Thank you so much for your comment. I will continue to film and post the exercises that I have learned. Thank you again!!
I've been living with cervical dystonia for 20 years you need to talk to neurologist about botox injections it will stop you from shaking so much
so much
So glad I found your video. And thank you for sharing your story. I was diagnosed with dystonia 7 months ago and I'm slowing learning how to deal with It and except it. Mine is similar... shaking neck and constant shoulder twitching. Have yet to make an appointment with the neurologist even though I was given a referral from my doctor months ago. I rarely talk about what is happening with me. And it's very noticeable that something is wrong me. Been taking a Parkinson's disease medication that helps somewhat. Anyways I'm just relieved that I'm not the only one and I can see that people are going through the same things as myself
First, let me apologize for my delayed response. Thank you so much for sharing. I know that sometimes it is hard to talk about, because it means it really is there. (If that makes sense at all). I saw several doctors, some said I was making it up for attention. One said it was ADHD. I saw a neurologist who preformed basic tests and said it was either tremors, early onset Parkinson's, or possibly early MS. He said the only way to rule out the scary two, was a MRI on my head.
Not going to lie, that sucked. Im terribly claustrophobic. The only thing that got me through was constant prayer during the whole thing, which lasted roughly 1 hour. But afterwards they reviewed my MRI and said everything looked normal.
With that diagnosis, I was sent to a "Movement Disorder Specialist". She reviewed my MRI and compared my drivers licence photo to my current self- stating that one of my shoulders is much higher than the other. She said this is consistent with Cervical Dystonia.
She said my treatment options were: benzodiazepines to basically slow me down to the point where I didnt shake, Botox every 3 months indefinitely, or surgery if it became bad enough.
Stubborn me did not like any of those suggestions. But I made the appointment for the botox because the soonest they could get me in was 3 months away.
During that time I sought out alternative treatments. I made an appointment for acupuncture (although ended up not having to go), and I made an appointment for physical therapy.
Here's the highlight of my story, my physical therapist was able to easily and accurately diagnose me as experiencing cervical dystonia. She explained that this is going to be a lifetime issue, but we could manage it easily without aggressive methods.
She had me do some simple stretches to loosen my neck up, and then she used acupressure- she found the muscle in my neck that was spasming, and she firmly pressed down and held it for about 10 minutes. IT HURT! But an amazing thing happened when she released the muscle. I sat up and my shaking was better by at least 70-80%
She sent me home with a list of stretching exercises that I needed to do, in order to strengthen the other muscles in my neck. The next week we did the exact same thing. By the end of that second appointment my shaking was completely gone!
I still do my strengthening exercises, and when I notice my shaking starting to come back, I make an appointment to see my physical therapist again. Now that my tremors are under control, I only see her about once every 3-6 months.
Thx for being so open about your symptoms! I got exactly the same set of difficulties. Also years of depression and not knowing why my head was/is shaking. Botox works for me now every 3 months, also Propranolol (but this med can also make you depressed). For now i think everything that removes depression and anxiety (like group therapy) also helps to soften the tremor. I hope you keep on doing videos and give us an update again soon :D
Kiezbanane thank you for being so encouraging! Making this video was so helpful for me. For one, it helped me to admit to the issue, the tremors and the depression. It gave me a sense of accountability. Almost like admitting to a secret or something. There was a sense of freedom in opening up admit it. And the other way it has helped is by meeting so many amazing people that share these symptoms. The depression sufferers and dystonia community are so incredibly supportive! Life is hard, even without medical issues. It's awesome to have someone to talk to that endures the same symptoms, and can sympathize.
I hope you have find some relief.I am still on my journey to getting the help I need...you are not alone in this.
It's really brave that you are documenting your process of being diagnosed and your thoughts on the whole thing! :) Watching your videos made my day. Don't get me wrong, I'm so sorry you are going through this. At the same time, it means so much to me to see someone else about my own age who is also going through almost exactly the same that I'm going through. I have pretty severe retrocollis and it was getting worse and worse over the course of 3 yrs before I was diagnosed this year. Today when I found your videos was the first time that I found someone talking about being around the same place in this whole mess/thing as I am :) You made a difference to me with your videos. And I think that is very brave. So thank you :)
That's exactly where I was at! I had this scary, debilitating issue, and I needed to find someone in my exact position. I found people that suffered from cervical dystonia, but I also felt like my position was unique because it just sprang up, and I'm still sorta young. I absolutely love to know that this helps you! I want to help, even if it's just one person. That makes having this worthwhile. You know? ☺
"If I can stop one heart from breaking,
I shall not live in vain:
If I can ease one life the aching,
Or cool one pain,
Or help one fainting robin
Unto his nest again,
I shall not live in vain."
- Emily Dickinson
So yeah, helping out just one person is definitely worth while.
Well, talking to you has totally made my day, so thank you!
I can relate to so much of what you are describing! I'm going for my second botox treatment next week. You have to wait 3 months in between injections. The first treatment was very successful, however, they didn't treat all the muscles with dystonia in my neck, so I'm still not feeling great, but definitely much better than before the treatment. I hope botox will be effective for you! :)
Let me know how your second treatment goes 😄
God bless you. Thank you for your honesty.
I can deeply relate to you when u mentioned that Motion is stolen from you. My heart goes out to you.
Thank you so much
I have Dystonia for years. we need to talk. . it is a very complex disease and fear is a big factor.
Thank you so much! This is difficult to manage. I think the worst part, for me anyways, is the social aspect. Trying to look normal, while being all twitchy. I get inside my own head and make it worse by wondering what everyone might be thinking of me.
Hey Christine, I'm just checking in to see how you're doing 😀 I hope you're feeling better!
Life With Us Just be yourself! Don't let other people's judgement issues push you into shadow.
Yes, fear is a big factor but I don't allow that to effect my quality of life, at least not everyday lol be strong and live your life!
Just recently diagnosed. 15 yrs in the dark. Now i have a diagnosis. Just here to say thanks to Him
I have Dystonia, both facial, mouth, and neck. I suffered so many years from it. The Botox worked for me but I am slowly recovering from the trauma having this for so many years.
I am so sorry that you are going through this. Have you tried anything besides botox? Have you found anything that makes your spasms worse?
Thank you for sharing!
Heartfelt and excellent explanation of how this is and how it's likely to be I've had DBS and even that is not working well better than without but so many variables within that hard to babe scientific. But for yours and kids sake be determined strong and a will to win I explain to everyone that reason I hold my chin is a serious neck injury and in the main they are all understanding so be confident and positive I'm not always but come round in the end and be brave so should you
Thank you so much. And thank you for commenting!
Hi, newly diagnosed here. My head tremor looks very similar to yours. It was a scary thing to develop this tremor, & of course, awkward. I have suffered from neck pain and a feeling of pulling on one side of my neck for several years now. The tremor only recently started several months ago. Thanks for your videos, and I'm curious to try to make this better with exercise, PT, meditation, etc.
Margaret Z Thank you for your comment! Please keep me updated with your progress. Praying for your success!
I feel the same way you do. I have had this since in my 20’s. I am now early 60’s. I have been and still am on meds that drive me crazy and I worry they will harm me in the end. I noticed as the years went on it did get worse which makes it hard to deal with mentally. I also have peripheral neuropathy in my left leg and foot - not related to the dystonia. It’s funny I’m taking all these meds and all they do is take the edge off. The tremor is still there which is a constant aggravation. Thanks for the info it’s good to know you are not alone (not good to know you have it too - you know what I mean) 😉 🙏
Jane,
First off I am terribly sorry for my late response. September until now has just been the WORST. I am only just now getting to comments and toying around with the idea of starting to post videos again.
I sincerely appreciate your support
I am 46 years old and I have lived with Cervical Dystonia for 30 years. I have been watching your videos and I completely understand what you are going through. Your life is not over. I have been looking for a follow up video on you. It is not easy. I receive Botox injections into my neck, I also do yoga and mediation. I'm very interested to know what you are doing now for your treatment now. Please reach out to me. Thank you. Lori
This video has been so helpful thanks
Thank you so much! That is so encouraging to me
Girl i have this! You have convergence insufficiency of your eyes! I have the exact same story. I also have a right lazy eye that rolls out to my right ear sometimes. I also have astigmatism. I also have a head tremor. My eyes are causing the tremor is what the neurological thinks so far but i have to do some more testing. A lot of people with convergence insufficiency get misdiagnosed with ADHD or high-functioning autism due to the disorientation it causes. I also have problems with depth perception, driving, being in bright lights, rooms with high ceilings, and going down steps. My neurologist wants me to see a neurooptometrist that specializes in convergency insufficiency and i have to do eye exercises. I also see more specialists soon. So far it appears my eyes cause the head tremor. Eye convergency insufficiency is a binocular vision disorder
I have cervical dystonia the one shoulder definitely goes up higher than the other. Did you have vertigo? I did have alot of other health issues prior to my head turning to one side this is terrible my toes on left foot cramp up bad too i feel contorted..
I understand your fear of brain surgery. I had brain surgery several years ago for a Chiari Malformation 5 years ago, and I was scared to death when I went to the hospital. But, that all changed when my anesthesiologist gave me some nitrous oxide while he put an IV catheter in my left hand. At first, the nitrous oxide didn't seem to have any effect, so he made it a little more concentrated and told me to take a deep breath, so, I did. That was it! I instantly felt this deep belly laugh come out of me, and I could not stop laughing!! I even made the OR staff laugh when I got excited about the unicorns on the wall paper when they started galloping around the wall! 😂😂😂
And yes, the surgery was a success!
cellogirl11RW Oh my goodness! The unicorn part made me laugh too. You are very brave!
Try half a Benydril and see if you feel better for awhile. Helps me.
@@JimmyBComputerGuy I totally agree with this. It does help
I have been having the same thing in seconds it doesn't last long but has been more frequent.... I've been seen by a ms docter and im clear now next step in general neurologist....
Do your tremors alternate between "yes" and "no?"
I can't say thank you enough. They thought mine was psychiatric in nature but only because of me having bipolar disorder. The neck pain became unbearable so I was sent to get a neck xray, of course it came back clean. But the muscles in my neck were rock hard. I'm being sent to a neurologist in April, it's the earliest appointment I can find. I'm worried about the diagnostic process, but it's getting so bad that I don't think they can over look it. Hopefully, fingers crossed. The only thing keeping me sane is muscle relaxers that I've been given to hold me over. It's becoming debilitating and quite quickly too after I started actually noticing it. Was it like that for you guys too? I was surprised by how fast it started to progress.
I'm hoping I can find some help but I'm stuck waiting another 2 1/2 months. I started looking for TH-cam videos on dystonia and I found yours. Seriously thank you. It's nice to see someone else who understands.
I'm so so sorry. I can relate to the struggles, the pain, the waiting, the misdiagnosis. I was also sent to a psychiatrist because my primary doctor suggested it was a mental health issue.
Two MRIs, several general practitioners, a movement disorder specialist, a chiropractor, and then finally my physical therapist. She instantly and accurately diagnosed my cervical Dystonia. She instantly knew how to treat it. That rock hard muscle you have is the same as mine. Imagine if you held a gallon of milk straight out in front of you. You could do it for a while, but then your arm would get fatigued, and the fatigue would make your arm shake.
My physical therapist "reset" the muscle by using accupressure. This is exactly what she did that helped me the most:
th-cam.com/video/v82zWVP6CZE/w-d-xo.html
Also i have mild rotary nystagmus too. As soon as i saw you i noticed your eyes don’t move right. I notice this on people because my eyes are messed up too
Lots of prayers for u
I got dystonia 2 1/2 year's spasdmic dystonia with a Lil dyskinea on my face. My voice voice has change and I'm learning to deal with this. It was done by malpractice.
Cessi Archilla woah, malpractice? ? what surgery were you having done?
i Think you are so brave for sharing this, thank you so much. I also have the same issue.. I tried a medication called Inderal/propranolol.. I take 30 mg and the symptoms dissapear like a miracle, att least for a while. I will soon start with potox injections, and i feel training helps me alot.
I have bad for perception and brain fog too..have u ever taken any psych meds..all the drs I've seen said my meds caused my dystonia.
Crystal Hodges Really?? Are the doctors accepting any responsibility for prescribing them? Which medications did they say specifically? Thank you so much for your comment!
I have this same issue 6 month ago . what is the reasons . how can I survive that
Muhammed Uvais good morning! I am so sorry you are going through this. I have heard that this tremor can be caused by several different things- it is hard to say which one is causing your shaking.
I have heard the shaking can be caused by TMJ, a genetic predisposition, a pinched nerve, an issue with the vertebrae, a brain tumor, an issue with the muscles that support the neck, and sometimes the cause is unknown 😟
Some of the treatments that I have heard about are:
Acupressure (this is what I used)
Physical therapy (this is what I used)
Acupuncture
A TMJ brace
chiropractor
Medication (benzodiazepines)
Botox
DBS Surgery
I Have this problem As well unfortunately
Depression is a huge part of the disease, try not to do to much research. You are not being a sissy. you are doing the best you can. You are a strong woman,it is a difficult road and the road is rough sometimes. There are not many people who actually make videos to talk to,that understand the anxiety and fear of this condition. I really hope that the Botox works for you.
Hello Christina mujhe bhi cervical dystonia Hai last 7 years aapane Kaise uska ilaj Kiya please mujhe bataiye
Did you get checked for upper cervical instability? Or inner ear conditions? Do you get headaches or what feels like pressure in your head? Hear any internal sounds?
bwink23 ok, funny story, I actually was sent to the ENT to check for distibular disorders. The appointment took about an hour, and they played different pitches in each ear. After the appointment they confirmed "good news, you are not deaf at all! "
Somewhere along the lines of being referred they thought I was in there for hearing, not equilibrium. They said I would have to make an additional appointment.
So, technically no, I haven't been checked 🤣
Life With Us Might be worth looking into. Vestibular disorders do funny things. And if you can afford it, a DMX motion x-ray to check for upper cervical instability.
Yes, definitely need to talk, discuss this issues until they come with a cure for it.
I completely agree!
Many times Dystonia effect others areas of my body! Eyes got blurry to see, my neck was so stiff to turn to see the traffic lights. On going facial and mouth movements were so distracting and exhausting to even eat or talk!
That sounds so terrifying! Have you ever had an MRI, or had your eyes checked to see how this could be? I am so so sorry you are suffering from this :(
My head tremors have lasted a short period and the chronic pain has been intense for 2 years. I was fired from my job for "performance reasons" shortly after it started. This robbed me of my benefits and this was early in the pandemic. April 2020. It took me 6 months to find another job
Only just looking into this head shaking business. I've experienced head twitches as of lately. And can't really put my finger on it. Is your head tremor accompanied by a warm sensation in your chest? I also have leg pain and I get twitches all over my body! Any ideas?
I am so sorry that you are experiencing this. My dystonia is central to my head. I do sometimes (not too often) get tremors in my fingers and sometimes my leg. I only recently discovered that a condition called RSD can actually cause dystonia. It is definitely worth googling and see if your symptoms align
I have cervical dystonia do u want to hear my story? In 2009 I was at the movies with my dad seeing year one (Jack black) in a movie theater. I told my dad my neck hurt we just shrugged it off. When we sat down I started to cry uncontrollably so we left in a panic I was just a kid. which hours later that day went to hospital and got diagnosed with Torticollis. I didnt pay any attention to it at all what so ever until I lost feeling in both my arms. and then started to lock up completly (head toward shoulder) once every year. Then it went into 3 day neck spasms every month or 2. loosing feeling in one arm (hurts and can't lift, cant look one way) like a severe arm cramp. my progressed into seizures every year maybe, called fits. I read up and basically they dont know why this happens. Id love to talk to someone else who has this I haven't talked to someone who has this before. from what I understand this is rare.
-Thank you :)
kendravan7622 I'm so sorry you are going through this. I haven't heard of anyone seizing, but I'm pinning your comment on the top in hopes that someone else might see it
Yes if u Google cervical dystonia and seizures it comes up somewhere. Thank you for replying it means Alot :) and Thank You!
Do you take medication for it bc I have the same thing I'm given just pills to help I dnt like taking pills
I was offered benzodiazepines for my tremors, but they explained that the point of the medication is, essentially, to make you so tired that you stop shaking. Because of that reason I said no to the medication. Is that what you find? How does the medication affect you? (Thank you for commenting!)
Fyi i just researched it go to dentist see if a mouth orthotic will help ot could be tmj related.
My grandma has really bad Parkinson's where practically her whole body shakes like all the time even when she is at rest and on her bed. When she goes on her bed it looks like she is having a seizure. I ask her if she is alright and she says "oh yes of course, this happens all the time. I'm used to it." I just hope she is. Her voice sounds soo shaky it's weird. I ask her if it hurts and she says no way. She just lets it go and she says she feels good but if it goes on too long, her shaking, she starts to freak out. Her tremors are full body tremors and she doesn't care, she just lets it go and feels good. She's weird. She shakes like Mariana pandolfi.
Beau Proctor she sounds like an incredibly strong woman. I've had to tell my family I was fine, even when I wasn't. Sometimes we have to be strong for those we love
Thank u for putting videos here it makes us feel not alone... It's very scary..... I'm dealing with it right now....
Hi I have dystonia too and so many symptoms I wish we could talk. I feel scared and cry about it so much.
cheri jane I'm so so sorry. This is a very scary condition. How long have you been suffering from dystonia?
I've had it since 2007 but milder befor that.
did any of you try a natural anti inflammatory like Turmeric? I believe it takes care of inflammation and can help with many muscle issues. Research on it on TH-cam here.
Try and let me know. But never mix it with other medicines, plus I am not a doctor, so ask your doctor if you are taking any medication that can be an issue or not. Best wishes.
Harib S.H. Thank you so much, I will look into it. I just started celexa, so I will ask my pharmacist if there are any known interactions
it was almost like mine, I had to go to psiquiatry but he said to my doctor I didn't have nothi g wrong in my mind. It is a difficult journey
No. It is not all in your mind. It is real. Tell your doctor to look up Dr. Farias. www.fariastechnique.com/
Does it feel like an Imbalance? Like your six sense can sense that your brains getting all the information from both sides but just a few seconds off sync?
The dystonia aspect, no. Not really. It feels more like swollen muscles and like my atlas & axis are shifted too far to the left, (which is the same side as my spasming neck muscle)
@@LifeWithUs
Well let's imagine your atlas and axis is misaligned and your head naturally becomes titled...that muscle would be put into constant spasm to keep it up straight so your eyes are even with the horizon
That makes so much sense!
I dont know what’s going on inside my head. But I feel like my brain is shaking. I feel dizzy and tired. I only feel normal when I’m traveling. I feel like moving even after getting out of the vehicle. Can anyone help me out ?
I feel the same way it sucks
How old are you? My daughter was just diagnosed with DRD and she takes sinemet because her brain can't make enough dopamine or use it whatever. But, I've heard that if symptoms start before age 30 it could be dopa responsive dystonia. Thank you for sharing your journey! Ask about sinemet.
Gail Rivas good morning 😀 my dystonia started when I was 27 or 28. I have heard of dopa responsive dystonia, but I haven't found anyone that can test that
Yay :D (I don't know how to reply to a reply - first time commenting on TH-cam vids) :p
I'm not sure how to on a phone, either, lol
I think am starting to have dystopia too, my head keep shaking uncontrollably
How long has this been happening to you?
it first started 3 years ago and its keep happening from then on, but its not that bad. my head start shaking at randoms mostly at school. hopefully it nothing serious.
💓💓💓
Im also cervical dystonia
My head goes to the left too & my right shoulder bra strap falls off my right shoulder. Jehovah, the God of the Old & New Testament, helps me to endure, through his Son, Christ Jesus. Just do your best & leave the rest through Jehovah, in Jesus's name, Is all we can do until Armageddon cleanses the earth of all negative forces.
My Dystonia was first to be a mental diagnosis then a neurological condition.
I had the same thing happen to me. My doctor suggested that I needed a psychiatrist. It was hurtful, disappointing, and insulting. We now know it has nothing to do with mental health.
Let me rephrase that, it is not caused by a mental health condition
hi my name is James I have Parkinsons , dystonia and had acancer brain tumor and a but load of spasms and pain. I take medical canibus oil to relax my spasms and pain it helps a lot
jimmy solomon of my goodness! You have been through so much! Tell me about your journey
Hello James, I feel for you and am sorry. My grandfather had Parkinson’s for years. I’m having head tremors that no doctor can diagnose. It’s been going on for a couple of years with the tremors and getting a little worse. I also have twitches and muscle spams all over my body. I’m wondering how your Parkinson’s started out, was it very slow that took years to diagnose.
I pray you will trust in the Lord Jesus Christ if you haven’t already for he will give sufficient grace for maladies. 2Corinthians 12
Acts 20:21; Romans 10
God bless
Hi I’m experiencing dystonia it’s progressed rather quick for me I’m relying a lot on your journey to further educate me , Can I ask What was the cause of your dystonia ? Was it genetics, accident, medication side effect induced ?
I hate to see people suffer in many ways okay!
I agree with you, I hate it as well! I reflect on the promises in the bible, of the time when no one will suffer. Revelation 21:4 " And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.”
You can create a lot jobs by caring and curing such debilitating conditions.
I agree, but the right kind of jobs. So far with this condition I have found many professionals trying to profit off of those of us who are suffering. It is very saddening that someone would try to profit off of someones suffering.
Can I please DM you somewhere?
Absolutely @thislifewithus on instagram, or thislifewithus@gmail.com
They were trying to figure out if it was psychogenic..lol..
Left shoulder higher => right weak hip .. unstable pelvis. Follow Postural restoration , Neil halinan on TH-cam.
We need to steps cure Dystonia it is not fun to have such debilitating condition. We need to solve many other conditions as well.
Yes, I completely agree!
My friend was suffering from Cervical dystonia is a painful situation when muscles near neck get contracted. It was very painful for her. Due this she has severe abdominal
pain. She tried Digestion support by "Planet Ayurveda" for this and got relief.
I am so sorry she is going through this. Has she tried anything topically for the dystonia pain?
Are you better?
Rogério de Paula Aguilar well, I've missed about 3 weeks of pt because of my abscessed tooth. I've noticed my head shakes slowly coming back. I finally got my tooth taken care of, so I'll be making a physical therapy appointment soon!
I hope you become better. I tried what your pt does holding the muscle for 10 minutes but didn't work for me, but I think I got the wrong muscle. I will try it again but ask someone if he/she can feel which muscle is spasming.
Definitely get someone to help you. Even I am not able to apply the pressure by myself.
Rogério de Paula Aguilar Are you feeling any better?
I am worse. Nothing works. And how are you?
I have just been given beta blockers relieved it within 5 minutes
Shona Dodson Really?? Is there a certain brand name you suggest?
Life With Us I will send you the name over later I'm resting after botox jabs yesterday. I took myself to my doctors. He said Anxiety is one of the causes of tremor when you get panicky and and your mind is working overtime it causes your heart rate to beat faster which makes you panic and then it causes tension and that's where the tremor comes in. It helps me. I'm taking Propranolol. Might not work for everyone but certainly calms me down x
Shona Dodson norflex and diazepam worked for mine.
Luke Petersen I can't take that tablet it doesn't agree with me
Stay away from benzos. I am going to try hempworx CBd oil for the neurological damage I have from Ativan and other issues. If you want to message me on Facebook it's Anjie McPeters. Also if you believe in Jesus, look up healing scriptures on TH-cam and also pastor Billy Burke healing seminars.
I am frustrated and angry that this Dystonia took so many years of my life to even function normally!
I am so sorry you are going through this. But I am glad you found this channel. I believe that if we all talk with each other we can find ways to help
Doctors love pushing ADHD. Unbelievable. Find a new doctor. This one seems like a hack.
That particular doctor in fact just up and quit workout any warning. The doctor I have now is amazing
@@LifeWithUs Good to hear you got a Dr you like and can work well with.