Karla's Story: Recovery from Cervical Dystonia and Myoclonus
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- Опубліковано 29 жов 2022
- Karla came to us from Mississippi struggling with involuntary movements of her head and body. Three previous neurologists misdiagnosed her as having a psychogenic condition. We were honored to help her get back to living her best life.
Visit us at www.northwestfunctionalneurology.com to see how you can become your own success story. - Фільми й анімація
I have had Dystonia for 7 years. This month I walked without help for the first time in those years. Cervical Dystonia is amazingly silent. Tremors gone. I saw a huge change by changing my diet to a carnivore diet. I would encourage others to pursue keto or Carnivore removing all sugar and carbohydrates.
Australia is in desperate need of this kind of treatment, if anyone knows somewhere that does it I’d be so grateful, I’m really desperate.
She didn't give much info on what the treatment entailed, but I did find it interesting when she mentioned "staring at dots on a wall." I have a severe pull on my left, and the right side constantly fights it, making me shake uncontrollably and giving me intense pain. But one night, I saw a video about looking as far left as you can for 30 seconds and then the same on the right, and it did give me temporary relief. The video was about resetting certain nerves. I really wish she had gone into more detail on the treatment.
Try looking into Ruth Chiles - The focal Dystonia Cure. She has a UA-cam channel, a book and a website. Her technique of curing this is based on Brainspotting and it works. To summarize the brainspotting technique, you stare for prolonged time at points in your visual field evoking certain memorized states of calmness. Try it. Not all dystonias are psychogenic, but probably a larger number of them are.
My cervical Dystonia is much like hers and I found relief by changing my diet to keto or for me carnivore. Look up Dr. Ken Berry
I hvala vam sto ste podijelili pticu da nama😊
Thank you for sharing, Karla Long Happy Life.😊
M going thru the same.. I can totally get what you are saying...
Feel for you Sister.. 🙏
Hey Karla I’m going through the same situation at the moment thanks for the advice
I've had Dystonia since I was 21. I turned round to my wife and said is my head shaking? No why? Please look at it I can feel it moving. So I went to see my doctor, who kept saying everybody's head moves. Yes, I know that but my head is moving all the time. I'll give you this medication and that should help. It never did. Then after two years, I started to get these ticks and spam's all over my head and started moving where ever it wanted to. And we had our daughter and she was only three weeks old. And I knotted her right in her face. The thing is I could have killed her not knowing when they were going to come on. That's when I thought I can't go on with this no more. So we had to take her to the hospital I had to explain to the doctors that it was me who knotted her in the face. We had social services the police and everyone else questioning me about what I did. If it was;t for this surgeon who looked at me and saw my head shaking knotting from left to right. They would have taken my daughter off us and I would have been arrested for cruelty to a child, And he said to me how long have you been like this with not only your head but your full body. So I told him. And sent me to have these x-rays of my brain and he said you have a condition called Dystonia. I thought thank God someone has noticed it. Not knowing what it was. But I still was worried about my daughter. Because she was also having X-rays on her face and head. Luckily enough she was okay. Then I started having Botox in the back of my neck to steady the ticks. They never worked after having them for three years. In the end, I had deep brain stimulation. And even now at 58 I'm still suffering where all my toes are more like a claw and turned in. And get cramps in every part of my body. Now I'm in a wheelchair walking about with a Zimmer frame and walking sticks. The only thing they can do with my toes is break every one of them. Plus have another brain operation. I get fed up with me falling and being black and blue with bruises all over my body not even knowing I've even fallen. I've broken my leg twice and broken bough my eye sockets. I wouldn't wish it on my worst enemy
How are you now?
Neil Seymour. From Hull, UK.To tell you the trough. I don't get all these spasms as much. I've decided to have all my toes broken. Will it happen? I don't know. While talking to my specialist he's not 100% sure if it will stop" But I'm still suffering. A couple of weeks ago, I thought to myself I'm going to take the chance and do some shopping. It was the worst chance ever. I was most bothered by the people calling me on the bus. These stupid women started talking against each other saying can you see him shaking when It's so hot outside. Excuse me" Are you talking about me? If so, shut the pair of your mouths up. You stupid old women. Getting off the bus I fell and knocked myself out. But besides that, I can say DBS does help. Even though I take that much medication and get confused.
So interesting the procedures they used that actually helped. For me staring at a tv screen for about an hour was the best thing I ever did for my recovery from dystonia 😅. Im so glad people like you that have made these miraculous recoveries that share your story with the world. You helped me believe I could get better, now I’m one of the strongest dudes at the gym. Together we are all going to rewrite the textbooks and create a far better world for those that will get this diagnosis in the future. I really do believe if I could learn to heal myself here on UA-cam, in time doctors will know exactly how to get people back to 100%!
Staring at a TV screen?
@@robertwilliams5618 😂 lol. I had very violent full body jerks slamming my spine around in response to light. Spending some focused time to understand the sensation of light and color removed a huge all day trigger for my spasms
@@macintoshimann9892you’re better now?
My symptoms have been a lot better since I had the operation DBS. In a way. I don't have these ticks and spasms anymore; the only thing I have now is I have cramps in every part of my mussels. My feet are the worst because they are not straight. Every toe is like claws. And the only thing they can do is to break every toe to put them straight
Thanks for sharing your story. I was diagnosed with FND (motor) a few years ago. My story is sooo similar to yours! It started as a neck muscle issue. I had emgs that should it was in a spasm. I had PT, chiropractor visits for years. Craniosacral treatment, acupuncture, etc etc. Nothing helped. Then the movements started. My neck would just whip to the side. Then it spread to my arm and trunk (all on left side). I've made funny videos to cope with the uncertainty. Doctors just passed me around, agreed it was FND. I'm in constant pain. It's been over a decade. I'm a young mom too. Wish I could get the help you were able to find.
What help please?
it definitely sounds like cervical dystonia! i suggest you look into that. it may give you some new found clarity. ive struggled with this pain and involuntary movements for 10 years now... i finally found out about cervical dystonia and am certain this is what i have. i know your pain. sending you love and blessings.
Hi how does it feels like? I spasm in my head and neck and spasm at the base of my neck. In between shoulder.
@@MykybeDivahow are you now?
FND is a different issue that cervical dystonia, although it may involve similar pathways in many cases. We have had a good deal of success treating FND as well. Set up a consult call with one of our providers and we'll see if we can help.
HI Karla, my daughter who has a dentistry past, now has this condition also. What do you think caused yours? Happy you are getting help.
Hi Karla, did you get lasting relief from this therapy? Is CD coming back ever since you took this therapy?
Can you please write your treatment in comment
With me it started when I was 13 years old. I'm 74 years old. I get botox injections. That's all. It ruined my whole life. I'm from the Netherlands and I guess the doctors here are not as advanced as they are in the States. I wish her neurologist would place some exercise video's on UA-cam.
How did you get cured??
Can you please share the doctor full name do you taking any medicines.
it’s 6am & i’m crying because iWant to get my neck straight so bad & start talking like normal
I didnt hear the cervical dystonia diagnosis. I got a CD diagnosis within 2 secs of being in the neuro office. Seems like this was deeper then CD
I have had cervical dystonia four about 5 years and it is horrific!
We would be happy to have a chat and see if there is anything we can do to help!
Thank you for sharing your story. I am considering going to get this therapy. I have lived with cervical dystonia for over 40 years and have tried many different types of therapies to treat the cervical dystonia. I'm wondering if this therapy can help me like it has helped you. Thank you
Did it work?
Has anything helped you thus far ?
Moj si ima 36 god pati od cerikvalne dostojnije vratni misica vec 5 godina odao je kod mnogi doktora i razne masaze uključujući i elektro stimulans nsta .dabi mu tek prije 2 mj neurolog dao konacnu dijagnozu tortikolis ili cerikvalna distonija..prije 15 dana je dobio tri botuks inekcije vjer tip A ali i dalje i ma pomjeranje i trzanje vratnih misica tj kontrakcije .😢
Does anybody know who treats lingual dystonia? Thanks
What doctor treat you??and we’re???
No comments?
How do you get here and do you take insurance? I need help. This has devastated my entire life. Please doctor
Please set up a consult with one of our providers and we'll see if there is anything we can do to help. Reach us at info@northwestfunctionalneurology.com
Does anyone offer this treatment near Milwaukee? Thanks for sharing. I have cervical dystonia too and need help.
How were you diagnosed with CD ? I am showing symptoms but Doctors can't figure out what's going on I'm in Chicago
@@erickalvarado7676 Unnatural movements of the body. Head pulls right. Head tremors. Inability to control muscle movements.
Never met any one in my life that has it.
I'm having a CD been 5 months already. I'm kinda depressed😭
I just found out i have it , I think my desk job is making it worse ...i have no idea what im going to do
It sucks
Hey friend want to wish you some courage. I had dystonia so bad I could barely breathe for a year, doctors told me there was nothing I could do, etc. im happy to report all of them were wrong and despite the impossibleness of the situation I did learn how to stop the dystonia and rewire my brain. It took more effort than I can describe but it’s very possible! If its helpful to know, I had gotten so bad I’d lost ALL the mobility in my neck. It took me several months to be able to look up or down about 1mm. But knew I could keep expanding my range of motion piece by piece and truly it wasn’t long after that I had to get a gym membership to keep challenging myself.
Its been a little more than 6 months, I have very minimal pain, I’d say 95% is GONE! I’ve also become one of the strongest people at my gym. I stopped using assistance to walk. Everyday the dystonia gets weaker and weaker. What I have learned is that not only is dystonia unable to keep what it took from me, but im so much stronger because of it! Doctors can make you feel like there’s no hope but this simply isn’t true! Well wishes for everyone, I know we can all make a complete recovery!
@@macintoshimann9892 it'd be great to know what you did.
@@robertwilliams5618definitely happy to share but there’s ALOT! From what I can tell we all recover a little differently but for me it’s all summed up in identifying the dysfunction, understanding the wrongness, learning a new way to accomplish the task, and then forgetting the old pathway that causes dystonic reactions. It sounds nuts but really it’s just putting the principals of physical rehab to work along with the mind, probably a lot like cognitive behavioral therapy.
At the very start I focused mostly on desensitization. Spent about a month with my hands glued to my neck massaging the muscles, focusing very hard on what my nerves were actually telling me, and doing my best to learn where my head and neck were in relation to my body.
Once I could stimulate my neck without dystonic spasms taking over I would work on moving the muscles with my hands first then learn to do it without assistance. I had to learn to move into the pain instead of run from it. This was absolutely the hardest part it was something like trying to move while being electrocuted. This greatly expanded my tolerance to the dystonia and allowed me to move more and more before ticking out. My evenings resembled neuro rehab, id smoke as much pot as I could, turn the lights off, play loud rave music, and just work on the most absolutely basic things like learning to turn my head.
At this time I started microdosing a psychedelic drug (don’t break the law!) Suddenly things sped up about 3 fold. My pain started going way down and I started to realize I was the one creating the painful contractions. After I had enough function return to do push-ups I got a gym membership and got back to weightlifting. It didn’t feel like I could do a single thing in there but very fast the exercises helped me understand the things that were going wrong. My brain naturally started to go searching for the dysfunction so it could fix it and be more efficient the next time. I also started doing cardio and found after I pushed through something that felt like a heart attack that the dystonia was now very weak. It actually felt defeated but still clinging. All the momentum added up to me being in control most of the time. The disease process reversed and from here on any voluntary movement caused my brain to seek out whats wrong and correct it. From here I just started engaging in life normally again and Im relearning how to do everything by just doing life at this point.
I got intrigued with some research on a plant called banisteriopsis caapi on improving motor symptoms in Parkinson’s and thought “why not?” 30 minutes after my first cup of tear I was pissed doctors don’t know about it. I bought an extract of the active harmala alkaloids and got greater effects yet without any side effects. What little areas that still remained contracted quieted down about another 75% and didnt return after the medicine wore off. Impressed with the obvious healing effects of microdosing and this new herb which has strong shamanic traditions, I went for broke and decided to try and reprogram things on a very fundamental level with more psychedelics that I have legal access to.
I arrived in my mind calm for the first time in years. It was so full of this toxic dystonia feeling, but it was like I had a shield up. From the place where we create our place in space and time for ourselves I went searching for what was really wrong. I kept asking myself why I shake until I understood it was fear of pain causing my muscles to move. I embraced the fear to see what it would tell me only for it to vanish. There just wasn’t anything real behind it. Without it, I experienced the signals that cause my worst dystonic reactions in a way that wasn’t even uncomfortable and incapable of causing spasms. I learned those feelings couldn’t hurt me with… well me standing in the way. I set new boundaries for how pervasive pain is allowed to be in my body, deciding it has no purpose beyond showing something I can straighten out. This was HUGE! The pain did not return and it was as though I “forgot” most of the dystonia in an evening. The real healing seemed to occur in the days following. Instead of just believing my pain was of my own creation and under control, I now KNEW it to be so. I wasn’t numb to it, it had changed to be much more proportionate to my senses. I didnt just hurt less, I had zero understanding of why I had been in pain for years because it was just gone. Indeed, the remaining tension serves only as an SOS that guides me out of the shape I was stuck in. Over the following weeks I “made friends” with the crazy bad impulses Id gotten to know so closely. I worked really hard on changing my perceptions of them in daily living and within a few weeks of the initial experience the fear/anxiety loop that dystonia works on wasnt firing much at all. This feeling grew into a new positive loop. One where using my body to accomplish what I will brings untold joy and euphoria, causing me to wake up excited to do life.
At this point my recovery is more in my mind than my body. Trying very hard to integrate my subconscious and conscious in a body that doesn’t shake from the conflict now. At my best I can express it creatively on my guitar. Its not the final nail in the dystonia coffin tho. I can hear the dystonia in my playing except it’s different now. What used to be chaos at a million miles an hour now works with the rest of me to use my fingers in ways I never could before the accident. Its in these moments I hear my story and realize just how beautiful it is to have what once was a sickness inspire music I used to dream of playing. Im hanging up my weapons from the long war against dystonia. Now all there is to do is learn to stop fighting myself, accept what is, and live! If I stop fighting the dystonia, the dystonia stops fighting me and the spasms are replaced by a peace unlike that I’ve ever known before. Feeling better than ever now, truly! There’s still plenty of work ahead, but I can tell I’m quickly becoming healthier than before any of this happened! Good luck and health to everyone!
Ayurveda, an ancient system of medicine from India, views health and disease through the lens of balancing the body's three doshas: Vata, Pitta, and Kapha. While Ayurveda offers a unique perspective on health and well-being, it is essential to approach cervical dystonia with caution and consult with qualified healthcare professionals like Planet Ayurveda's Expert team for appropriate diagnosis and treatment.
Sounds expensive!, I m looking up your recommendations, " cervical dystonia" its a bitch.
Cervical Dystonia can't be cured.... it's won't ever go away once it comes on. I have it, I have had it for 5 years after I fell down a cement flight of stairs and hurt my tailbone which caused the nerve damage. Cervical Dystonia comes on by surgery or a bad accident that changes your nerve system. Once it's damaged it can't be repaired.
@@kurtharp9073 Thank you, I haven't heard yet of a low Ketogenic diet to help so I will 100% try it! My husband is a Chiropractor, funny I met him going to his clinic for help right after I was diagnosed with CD. I've tried botox injections as well, 600cc every quarter. It was a mask for the issue, it helped a little but it's still there. I do believe a lot of people with CD go to alcohol or other drugs but all that does is cause further nerve damage. I do know diet and movement of retraining your brain can help release some of the tremors, if I eat clean they are not as bad. Also stress brings it on highly, so I have to keep myself in check.
Research anyone reading this with CD and how Alcohol effects your nerves system. STOP drinking, your making it worse!!
Thank you again for the diet suggestion!! Very interested to see how that will factor in.
It also come from head and neck cancer radiation treatments
@@saprissa40what about MRI?
How are you now?
Does any one from this company respond to people who needs help . Why post a video and don’t give people information. Be a blessing answer these people please I’m begging you . God will bless you even if you don’t believe in him
I have dystonia to it’s hard for me because I go to the hospital when my dbs is off
What is dbs
Is it helpful
Nice story . But how people like me can benefit from it ????