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Dystonia and Gut Health
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- Опубликовано: 25 июн 2022
- In this episode of I CARE FOR YOUR BRAIN with Dr. Sullivan, board certified neuropsychologist Dr. Karen D. Sullivan discusses the importance of gut health with the neurological disorder of dystonia. Learn more at www.icfyb.com or follow us on Facebook at icareforyourbrain
This is the ONLY place I have found that someone understands Cervical Dystonia and describes the symptoms to the tee. It is so hard for people to understand what we live with on a daily basis. I actually feel like I can breathe a little now knowing that someone out there understands.
You just mad my day, thank you!
Does anyone else feel like they can almost control it then it sneaks right back up on you
Thank you for this. I have lived with Cervical Dystonia, for 15 years. A holistic approach to health is so important. There is so much overlap between "systems". I have found a way of life that encompasses ketogenic diet, meditation, exercise/stretching and prescribed medication.(Baclofen) Recently my digestive process has been causing increasing issues and I have become aware that gut health is of huge importance. My symptoms are manageable and as I have reached acceptance with the situation, my mental health has never been better. I had significant mental health issues a decade before I was diagnosed however.( I am also a recovering alcoholic, 15 years sober)
Found this so interesting. Especially the gut health aspect. I am vegan so my food is plant based. No dairy or meat etc. It has cured my severe migraines, and has made me quite a different person mentally. It also lowered my blood pressure. So interesting to hear your points on beef. Red meat is classified as a carcinogen nowadays so it makes sense to connect the dots between the gut and the brain, and how one influences the other. I am applying for a job to watch over a 1 year old baby overnight with Dystonia. I am doing a little reading up on the condition. Its always good to research and know more. Thankyou for this insight!
Thank you so much for putting this info out there for us to find. I have cervical dystonia and this was a huge validation for me. I have many of the symptoms you mentioned the research shows: the low pain threshold, issues with my neurotransmitters, concentration and speech issues, sleep issues and gut issues. BINGO! I knew they were connected but didn't think they were related to the dystonia. I've been working with a Functional Medicine provider and I've shared this link with him. I eat a whole food, super healthy diet but it's not yet enough to solve the dystonia symptoms. I hope researchers do more studies soon on this so we can treat the root causes, not just mask the symptoms with shots or medications - both which I won't do because it's not curative.
I have dystonia in my entire body. Benzos & lamictal got rid of it entirely, but now im stuck on these. I suppose that's a worthy tradeoff, as the pain was unbearable. I found out recently that i had very high levels of lead and mycotoxins from my doctor. I would love a video on mold. It seems doctors dont think its real problem until you've got wild lab work and are dying-- then poof! Here's medication because it IS real now. My aunt nearly died of mold poisoning and successfully sued her apartment. Which means it's real, by default (medical records). I have also had doctors not know what dystonia is and even argue with me. Lol. Thank you for taking the time to make this.
Hi what is benzos and lamictal?
@@chrislee4417 benzos= benzodiazepines, which is medicine such as Ativan, Xanax or colonopin- used for anxiety and seizures (among other things). Highly addictive though works great for dystonia. Lamictal/lamictrogine= anticonvulsant/mood stabilizer.
Can you plz tell me about Lamictal benzos dosage you take?
@@DrAwaisanwar since you're a doc:
pristiq ER 50mg (lexapro was 'ok'), LAM 150 mg (I've dropped down a lot to this) and Ativan 2mg 3Xa day with a side script for Xanax for As Needed.
It's been many years now and I'm feeling better so I'm working with my doctors to drop down as much as I can. I hope this helps. The misery I experienced... 💔
@@chrislee4417 will you clarify your question... if you're wondering what those are, they're perscription drugs. Benzos are for anxiety and seizures. Lamictal is an anti-epilepsy drug and bipolar drug (I am not bipolar but it is also used for that).
My neuroligists have had NO idea about diet and gut health.
Excellent video and research! I have Parkinson's and I'm focusing on gut health and nutrition for tremor, muscle stiffness and pain. Thank you for sharing your research and making these video's!
Has that worked ?
@@EdwardBose- It hasn’t cured anything but I feel some relief from the symptoms.
Thank you so much for sharing your knowledge, after an HPylori infection, diagnosises of POTS and Cervical Dystonia you're helping me put the pieces together. None of my Drs have ever mentioned the connections, thank you.
Your gut brain axis seminar has changed the way I eat and I'm experiencing great changes because of it. Looking forward to the survey you mentioned (if that's still a go)
Im diagnosed with dystonia but i believe it will go away
I agree. We need a new model. Cervical dystonia is a living hell. How do we correct the damage done?
I can't thank you enough for the information you give us. What relief it brings in just knowing.
I have Cervical Dystonia, feel now it's all through my body, so finding your video was a God send. Would definitely be happy to learn more about how the gut plays a big connection. It was interesting that you mentioned rare beef plays a part, I've always eaten rare beef. If you could put the good and bad bacteria in the comments that would be be much appreciated. Thank you for sharing these wonderful videos.❤
Hi! Thank You for sharing this! It is a useful tool to share with those unfamiliar. My catastrophic generalized Dystonia symptoms which began in 2009 have really lessened with devotion to diet editing per full functional medicine doctor Workup (with testing you discuss here)to eliminate everything in my environment that has poor epigenetic impact and prevent inflammatory response. I also use constant Neuroplasticity music movement therapies per dr Joaquin Farias and I have a very discipline daily practice of meditating4x/day. I also weened off all pharma therapies which only sedated and reduced 😳perception👀 of symptoms while exacerbating all symptomology putting me repeatedly into hospice prior to weening off all meds winter 2020. I only eat organic whole food vegan from scratch with further editing to boost healing. I’m no longer bedbound/wheelchair bound and am getting stronger and stronger. Also PK Protocol(developed by dr Patricia Kane )and Myers cocktail IV infusions help me during flares. Hope this helps!
I have Cervical Dystonia. I love this information!! Please continue to inform us about ways to improve our condition. Over 25 years of having this disorder I have been “experimented” on with various medications. Myobloc injections work best for me.
God bless you Dr. Sullivan, thank you for educating us. I shared this with my friends and family members.
EXCELLENT ❤
It was very helpful . I wanted to know about how to increase the good bacteria ratio in our gut to reduce dystonia symptoms naturally if you have some info.
I also just recalled that just before I had my first dystonia related tremor I had gut issues.
Brilliant talk I will look at your gut health lecture. I have been diagnosed with cervical dystonia ( torticollis) which I know is mild compared to some people's experiences. So perhaps it is easier for me to be a little more positive when I see great work being done by people like yourself about avenues to pursue like better gut health. But it does give me hope and along with some other things I am trying out I will certainly be following your advice!
Amazing at last I have a better understanding about the involvement of gut and why I have these symptoms even though I have a good diet.
I never made any connection with my irritable bowel syndrome and my cervical dystopia. Wow!! I go IBS when I was teaching my older daughter how to drive!
id do the poop transplant !! i did a lot of blood brain barrier gut health treatments for my brain injury with a functional doctor but my neurologist isnt convinced i can control my dystonia through diet!
i have poor memory but remember words like short chain fatty acids and post /pre biotics
this was a great podcast thanks
500,000,000 brain cells in my gut?? can't wait to tell my Dr i finally have explanation for weight gain...all the knowledge gathering i have been doing!!!
could you make a video on how to fix short term memory? thanks
I have had these symptoms I’m. I thought was a pinched nerve. Went thru alot of doctors and useless produces. 😮😮Chronic pain. Hopefully fine a cure.
I was recently diagnosed with SIBO small intestine bacterial overgrowth . after that my dystonia took a hard bad turm . My cognition has dropped along with many other of my abilities. Sound familiar , I am desperate
Can persistent neck muscle pain be a form of dystonia? I don't have movement issues and my neck is straight but I've had tight muscles and tender trigger points on the right side for years and can't figure out what is causing it.
I would do a fecal transplant if it would improve quality of life. What type & brand of probiotics should we be looking into?
Anyone with Ehlers Danlos here!?
Symptoms & signs of hEDS since childhood. Been researching medical journals for years but gaslighted by sooo many drs. My new primary is working on finding on specialist to diagnose EDS. Adult daughter recentky diagnosed w JHS but Dr may change that EDS after family history & genetic tests. Three generations, my mom,, me, my Daughter all have EDS Symptoms, POTS, Migraines, GERD, IBS. Dry eye disease, SICCA, neuropathy. Along with these, I also have MCAS, SIBO, trigeminal neuralgia, hemifacial spasm, severe DDD, occipital neuralgia and dystonia. Neuros didn't even try to find cause of my dystonia. Not even so much as a blood test of any kind was done by any of them! They just guessed & did not give info on the type of dystonia. I read the recent study Dr Sullivan mentions here about gut health & dystonia while researching EDS & dystonia recently. No movement disorder Dr mentioned both EDS and POTS can both cause dystonia. My gut is a mess and every time my gut acts up due to diet change my dystonia or PLMD gets worse. Love Dr Sullivan's amazing informative videos. Especially gratefu to Dr Sullivanl because I have been through too many uneducated Dr's. Love how she wants patients to be educated. So very sorry you are dealing with EDS too.
Have a great vacation 🏖️
Interesting….. my cervical dystonia started years ago and I thought it was just a ‘nervous twitch’. It was diagnosed by a neurologist who offered Botox injections which I did not want. I went on to get ulcerative colitis for 6 years before getting my full large intestine removed and now have an ileostomy. I have to be very careful what I eat now but I still have dystonia . It hasn’t gotten worse, but it hasn’t gotten better, neck exercises help but I have just had to learn to live with it. I would love to know what causes mine?
Can you please give a spell of bad bacteria you are talking about on 20. 19? Thank you.
I will be checking out your gut series. Thank you for bringing us the knowledge we need. Definitely not getting it in a 15 minute Dr's visit.
i’m worried about my grown daughter. she takes adderall and was in recovery for heroin addiction.
Anyone here feel weird sensations in their face with the dystonia?
The non motor symptoms disrupt life as much as the motor symptoms!
If loss of the sense of smell is a harbinger of Parkinsonism then depression’s connection to dystonia is entirely possible.
Hey,
Thank you!!
I get acute neck dystonia when I take Adderall XR, bupropion, hormone supplements.
Onset around 50 yrs.
I have really redundant colon and ADHD (DNA MTHFR 677T Homozygous)
So... bupropion saves me, but the pain symptom makes it intolerable.
Any hope I can find some therapy to resolve dystonia?
I will be more consistent with probiotics. I have 2 kinds... one is from dirt.
I eat much more healthy... following Dr Mark Hyman and Terry Wahls protocols.
I also read exercise helps.
I am getting dog today...yay!
It's a real career killer to be unmedicated and fairly severe ADHD symptoms.
Thank you!!
Eat healthier, Fasting, meditation working on the alignment of your spine rather then stretching and smoking weed really helps get rid of pain for a little while and helps you relax
My cervical dystonia has been getting worse over the past few years and now my back as of last year is starting in. Thanks for the informative video... now I need to google what is a fecal transplant ¯\_(ツ)_/¯
IT IS SO DISTRACTING
What about trauma? I had trauma about 15 years prior to symptoms
What trauma?
To keep this short. .several moments in life. Stuff that left me shaking at night in fear and worry.
❤️👍❤️👍❤️👍
This is lovely but GI drs suck. I have dystonia and I can’t even get tested for gut illnesses. Haven’t been to the bathroom w/o laxatives in 2 years but my dr has informed me I don’t have celiac or SIBO/SIFO/IMO. How does she know. She just knows.ummm…ok. Thanks I guess. My guess is she gets waaaaayyy more money doing a procedure in the hospital rather than a simple blood or breath test.
Yeah I tried to talk to my neuro about my gut and boy did that not go well.
💙👍