Background: Respiratory difficulties are sometimes reported by patients with cranial-cervical and other forms of dystonia, but the nature or mechanisms of the breathing problems have not been well characterized. Case report: We review 13 dystonic patients with various respiratory complaints and describe their symptoms and response to treatment, including botulinum toxin (BoNT) injections. Discussion: Gasping, stridor, interrupted flow of speech, paradoxical breathing, dyspnea on exertion, and other respiratory symptoms reported by patients suggest involvement of the upper airways, chest, and diaphragm. BoNT injections may be, at least partially, beneficial in some patients. Conclusion: This series of patients draws attention to respiratory distress as a potentially serious, even life-threatening, complication of dystonia.
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rideabike
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I'm just gonna go with my gut on this for me, because most docs still dont know much about Dystonia.Most docs havent heard of it either..i have to educate them.
I agree and I'am also doing that. My GP doesn't know anything either so I was hoping the specialist did but he didn't comment when I told him about the trouble with breathing. Surprised when I saw this online. I don't know what to think about him. Thanks for the encouragement. I doubt there is anything that can be done but it's still nice to know. Take care!
This is the first time I have come across any reference to shortness of breath in relation to Dystonia. I have exactly that and like you have mentioned it several times when speaking either with specialists in particular a chest specialist. He said he could not account for why I get out of breath....he said it was either anxiety related or perhaps something to do with Dystonia. This sounds odd but I find it so comforting when I discover someone else with same symptoms because I still fight this issue of people seemingly not believing you. Thinking I am making a fuss.
Well I am very grateful to you for raising this....it’s so good we share our experiences together....far more useful than Dr or specialist visits
Agree with the last statement. The article was on Research Gate but since I'm not a professional I couldn't download the whole article. I'll keep looking because they sometimes show up on PubMed. I was feeling the same way as you when I read it Thanks for your reply!
Wikipedia says: ResearchGate is a European commercial social networking site for scientists and researchers to share papers, ask and answer questions, and find collaborators.
Users: 17 million (May 2020)
It is just what it says....research. I guess when papers are published it means they may or may not be acceptable as fact. With my symptoms it seems to be a plausible explanation.,.but I would have liked to have read the whole submission. Its primarily a social network service for scientists but is generally well accepted is what I read so they put the information out there for others scientists to corroborate on.
Conclusions: In some patients with dystonia, gasping, stridor, interrupted flow of speech, paradoxical breathing, dyspnea on exertion, and other respiratory symptoms suggest involvement of the upper airways, diaphragm, or both as a result of “dystonic respiratory dysregulation”. Botulinum toxin injections may be at least partially beneficial in some patients. This series of patients draws attention to respiratory distress as a potentially serious, even life-threatening, complication of dystonia.
Dysautonomia type issues (where various autonomic functions can become dysregulated) can occur because the norepinephrine / epinephrine production is commonly dysregulated in dystonia. More links to scientific research can be found at dystoniahelp.org. Research Gate is aimed towards academia and research institutions, so much of the text is behind a paywall. Good luck to everyone. You're on the right track, researching yourself. There's no money in finding your cure, but there is in Botox, unfortunately.
You are very kind in sending me links to various sites....I am very interested....for me, you have found and sent on to me for the first time some references to the link between cervical Dystonia and respiratory problems. As I said earlier no one has said a word to me in all the various specialists trying to find explanations, reasons evidence that I am not exaggerating/making a fuss, so what you have done for me is invaluable in these incredibly worrying times. Thank you rideabike v v much.
I have a condition called spasmodic dysphonia and when my vocal chords spasm it's hard to talk I also find it harder to breathe. This explains it and more importantly puts my mind at ease. Thank you
It seems there is a lot of interest and lack of answers but I suspected spasmodic dystonia when I watched a YouTube on it and she sounded much like me. Some do sound worse but not everyone is the same. It's annoying more than anything and a bit frightening because it's the airway that's compromised. Thanks for the reply....😊
This is very interesting to me. I've always had strange breathing - even as a child my mother would tell me to "stop doing that", and I had problems with exercise, but it was never investigated. At 52, I was told I had sleep apnea - I tried the CPAP and a dental device (at great cost), but they made my nighttime breathing worse! Since I was diagnosed with dystonia, I believe it's part of that. BTW - researchgate is legit, as are the papers on it. You can ask the researchers to send you the full text. Sometimes they will.
Hi, I am new here. I have been on my health journey for quite sometime. I am now getting some answers. I had a ICPET procedure with radial and jugular catheterization. They have told me they are thinking dystonia autonomic dysfunction. I have not had my big follow-up yet. What u guys are talking about though abounds a lot like me. I have been diagnosed with vocal cord dysfunction. When I am triggered which is very much of the time. It is also called paradoxal fold something. Sorry. I do have Botox to help the spasms of the vocal cords. I am excited to learn more about dystonia and hope to find some ways to make the most of my days when I am struggling with the breathing fatigue migraines IBS problems. Thank u for listening to my venting.
I learn more about with each post. So glad you did vent. It's a tricky thing to deal with and especially with confusing variations. I get headaches a lot but not migraines and also have tinnitus and wonder if it's connected. Take care Amber!
Thank u for replying. Do u have chronic fatigue or fibromyalgia, chronic pain. Health problems that I have never had before just started and got worse over the yrs for me.
I don't have either of those but a bunch of progressive health problems started around the same time. I thought they were Parkinson's symptoms. Turned out they're not but are ataxia symptoms (head tremor that isn't dystonia or essential), so had an MRI because the Neuro saw something in the cerebellum on a previous CT scan. I'm waiting for the results and feeling impatient.
Dystonia in my leg is ongoing so if cerebellum ataxia is positive it could be related to atypical Parkinsonism or MSA-C. These aren't happy outcomes and good days are hard to come by but I try to keep positive even though Covid-19 isn't really helping.
By the way there is a good read at this website (jw.org) on "Pandemic Fatigue-find out how you can beat it." I found it really helpful and many symptoms were mine. Probably not alone with those. 🤤 😯 🙃
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