Long Covid and Dysautonomia: Part 1
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- Опубликовано: 16 сен 2024
- In this episode I talk about Dysautonomia as experienced by Long Covid sufferers. This is Part 1 in which I talk about the symptom itself, the medical assessment, diagnoses and causes of dysautonomia. In Part 2 I talk about the specific and general management of dysautonomia, leading onto the recovery, time course and possible outcomes.
I am Dr Tim Robinson, formerly a GP for 30 years, retired as planned at the start of the Covid pandemic. Since then I have become involved in the world of Long Covid. Currently I am GP clinical lead for Long Covid NHS in South West England, as well as GP lead for three NHS Long Covid Services - Dorset, Bristol and South Devon. I am also Clinical Lead for Hope for the Community CIC. I have research involvement as co-investigator in a study on breathlessness in Long Covid, University of Bristol.
Long Covid Doctor is an educational series for Long Covid sufferers; each talk covers the many aspects of Long Covid, the symptoms, causes, treatments, management and expected outcomes.
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Disclaimer: Long Covid Doctor is an educational series. Any advice, diagnosis, treatments mentioned should only be considered after discussion with your own GP or qualified professional health provider.
References, links, resources:
NICE Covid-19 rapid guideline: www.nice.org.u...
How to manage post viral fatigue after Covid-19: www.rcot.co.uk/how-manage-post-viral-fatigue-after-covid-19-0
Your Covid Recovery: NHS England - self-help patient resource for symptoms, information and self-management of Long Covid: www.yourcovidrecovery.com
Specific resources for POTS:
www.potsuk.org
www.stopfainting.com
Thank you! I developed ringing in my ears, chest pain, exhaustion, mental fogginess, and dreadful insomnia - have felt like a different person than before. I keep hoping it will get better, but now my students are bringing every variant into my classroom on a daily basis!
Your story is very familiar. It certainly sounds like classic Long Covid with many of the associated symptoms- including various dysautonomic features. I sympathise with you and the school classroom dilemma - front line in the viral pool - so sorry. I am glad you liked the YT. If you think anyone else in your local Long Covid community might benefit from my postings (YT and Pod), spread the word. Meanwhile I wish you well.
@@longcoviddoctor Thank you so much! I teach in a university, some of our courses are stuffed with 300-500 students in overcrowded lecture halls. I'll share your videos to all the profs I know! Thanks for your work!
Thank you Dr...an informative talk!
Thank you Dr that was extremely interesting.
I have some strange symptoms since having COVID over 3 years ago
Headaches/ migraines
Severe fatigue if i have a busy day this is accompanied by my heart seeming to struggle when i am at rest, tinnitus, balance issues. Overheating at night
I have had blood tests and even a brain scan and nothing is present however i have to think about pacing myself as i get so exhausted then the headaches/migraine comes
I am going back to my GP but when i mentioned long COVID it wasnt even acknowledged
I look forward to your next post
Thank you
Dear Inatwirl !!! - thanks for your comments. It certainly sounds like you have dysautonomia - problems with headache, tinnitus, balance and temperature regulation. If your headaches are frequent, I think you would benefit from preventative treatment - see my recording or listen to the Podcast on headache. If you think anyone else in the Long Covid community might benefit from my postings (YT and Pod), spread the word. Meanwhile I wish you well.
I walk up to sick co workers and say I want what they got.
As someone who didn’t take, I don’t get sick like all I know who did.
My coworker has a sinus infection for at least the last 6 months.
When he started I got it for a week then good. And he’s never gotten better.
His mother has nerve system damage.
Why does no one wanna talk about how they should have listened to us
This is a very helpful video and I am glad to have found it. We are having these problems in our family. In my case (I am 66), I had highly alarming problems with clotting. I found that Nattokinase helped to resolve those & keep them from recurring. I started taking Nattokinase (which is available on Amazon and not too expensive) last spring, because I had 6 clots ranging in size from a walnut and a hazelnut to a raisin, up and down my left leg below the knee and onto my foot, close to the surface. They were obviously on a particular blood vessel that had been effected. At the time, I was already taking higher doses of Vitamin D & Zinc daily; a standard blood-thinner was not changing the clots (although perhaps it prevented others from forming?); I was very alarmed by sudden headaches and "stabbing pains" in my torso, worrying that those were also from blood clots or microclots... I tried taking Glutathione to help with fibrolyisis & combinations of L-Cysteine with Glycine (to make more glutathione) and also things that are known to help the liver (Milk Thistle, "liver detox" etc.). I do not smoke & only rarely drink some wine, avoid salty foods, drink lots of water, etc. The first time I had thrombophlebitis, in that very leg but in the upper thigh, was after giving birth to my 2nd of 3 children. There was damage done to a blood vessel in the area of the clot, from medics pressing too hard on my legs to help me deliver. As a result, having also rather thin blood vessels (and vasculitis, meaning varicosity from pregnancy), I have always paid attention to symptoms of clotting. Well, to cut to the chase, it was Nattokinase that made the difference for me. As soon as I started taking it, I saw the clots begin to soften and shrink. Over a period of months they have completely gone away. There have been no new ones. I no longer feel odd sharp pains in my head or in my chest. I began by taking the recommended 1 capsule daily (in the morning, because Japanese people eat Natto for breakfast); gradually, I increased my dose to 3 capsules a day, because that seemed to speed up the process. I now continue taking 3 capsules together in the morning. I have not noticed any side effects whatsoever. I think my sleep has also improved, in the sense that sleep feels less stressful & I wake up less during the night. I take nothing else for my post-Covid symptoms except full-spectrum Vitamin E (on my doctor's recommendation), a B-Complex supplement and the usual higher dose of Vitamin D3 with K2. Occasionally I supplement with calcium or magnesium; occasionally I take aspirin or ibuprofen for joint aches and other inflammatory symptoms of aging. (And I continue to take Alpha Lipoic Acid, CoQ10 & L-Carnitine every day, for the anti-aging benefit, as I have for the past 25 years or so.) No longer taking any bloodthinners; all other symptoms much better (though not completely gone).
Thank you for sharing your fascinating story, your observations and experience on Nattokinase. I have been hearing similar positive outcomes from other patients. I am glad that it seems to have helped resolve your thrombophlebitis. And thanks also for your complements about the YT video - If you think anyone else in your local Long Covid community might benefit from my postings (YT and Pod), spread the word. Meanwhile I wish you well.
Hello, following my vaccines I have this…. Hyperadrenergic pots diagnosed no digestion temp disregulation I’m so broken and now bed ridden. Dr Gall is treating me and it was so nice to feel validated as symptoms and so widely spread thank you for this I’m currently on a mission to spread awareness ❤
Thanks for your comments. So sorry to hear your story. My heart goes out to you. I wish you well.
Do you think MCAS is something everyone should be tested for?
I think a thorough Long Covid assessment will identify MCAS. As I state in my video on MCAS, there isn't formal blood testing for the condition. It is diagnosed on clinical grounds. Hope that helps.
It affects middle-class public sector workers the most. It's very concerning.
hi there - interesting comments. not too sure about what your concerns are. maybe elaborate.
Yes, including teachers - I teach in a university, and we're packed into lecture halls with poor ventilation,, 500 students in one class, standing room when there aren't enough seats, and every student taking five other classes exactly the same - 2500 close quarters interactions per student per day. A lot of us have started wearing masks again, the classrooms are just too crowded not to.
While more people know about dysautonomia, very little is being done to help patients.
Money is instead spent on helping people quit smoking.
Cheers then
hi Patrick - yes, dyautonomia treatment is only with beta blockers and possibly Ivabradine. And not forgetting the fluid / salt / hosiery advice. But besides that, the important thing is that is recognised and validated by the medical profession. Good luck.
Furthermore there is actually a far more effective treatment known as saline fluid infusions that are cheap and easy to administer.
But the only place in the UK where these were administered were cut.
www.bbc.co.uk/news/uk-england-york-north-yorkshire-66326323.amp
The NHS strikes again with poor service