Discover and read the best of Twitter Threads about #POTS

Most recents (24)

1/🧵 ⭐️ Postural orthostatic tachycardia syndrome (#POTS) and ANXIETY ⭐️ (a thread in response to recent experiences patients have had on here and some questions from others.)

-👉POTS is NOT a psychological disorder….👈
2/ POTS patients have lower levels of anxiety than the general population in studies… (this is a great article on POTS in general)
3/ this study took POTS patients and controls and induced lower body negative pressure to manipulate orthostatic stress. They had to fill in a psychological questionnaire. POTS patients heart rate went up by 39bpm, controls by 3bpm….(that rise of 39 won’t feel nice)
Read 20 tweets
Omicron wave of mass infection showing its impact. Too many friends & colleagues reaching out for advice on #LongCovid. Heartbreaking.

A 🧵on Rest & Pace. Biggest advice: don't repeat the mistake that most of us from the first wave in 2020 did i.e. push yourself.

Data suggest recovery after the first few months is infrequent.

Tran et al (France)*:
-Of LC patients who were still sick at 2 months, only 15% recovered by 1 year

-Of those who thought they were better, 33% subsequently relapsed

Whitaker et al (UK)*:

- A rapid drop-off in symptom reporting by 4 weeks, a further, smaller drop by 12 weeks, but then very limited further decline (for up to ~22 weeks of study duration) for both men and women.

*Non-vaccinated population
3/… Image
Read 21 tweets
I haven’t provided much of an update in my #longcovid #mecfs #pots #mcas picture.

So here it goes… 🧵

For reference, I got Covid June ‘20 and spiraled into #longcovid July-Aug

What I’m working towards right now: tethered spinal cord evaluation by 2-3 surgeons.
Between Aug ‘20 - May ‘21 I was dx’d with: POTS, SIBO, MCAS, ME/CFS.

I also was tested for collagen disorders which came back negative.
Between Dec ‘20 and Aug ‘21 I had a workup around my c-spine because of *pulsatile* tinnitus in my left ear - a ‘whooshing’ sound. It can be an indicator of a vascular issue at the cervical junction (compression).

A CT revealed I had jugular compression.
Read 27 tweets
🧵 on repeat infections, negative lateral flow & #PCR tests, and the use of #COVID19 antibody tests. An n=1 experience #OmicronVariant #LongCovid #MedTwitter #TeamGP #psychtwitter #LongCovidKids #COVIDisAirborne #CovidIsNotOver 1/n
I had acute #COViD19 in Nov 2020, PCR +ve. Developed #LongCovid a month after. Had one dose #Pfizer Feb ‘21 which gave me new symptoms. Out of interest I had my anti-spike antibodies done May ‘21- they were above the upper limit the assay could measure 2/n
With the passage of time my antibodies dwindled. I had them rechecked in Dec 2021- both nucleocapsid & spike antibodies were below the protective limit. Therefore I had no protective antibodies. 3/n
Read 18 tweets
#chronicillness Twitter to doctor advocates
-you’re only speaking out because you’re sick yourself
-now you know what it’s like (implication- all of us neglected & psychologised patients before. NOT true- some of us just did our best within a system stacked against us)
-you need to mention ‘x’ disease as well. (We’re learning as fast as we can. Remember we are sick too. Some of us are bed-bound lying in darkened rooms. You know how much energy it takes to speak up)
-don’t dabble in areas you know nothing about. (In my case #Palestine. Being a chronic illness advocate doesn’t make me a one-trick pony. I’ve visited the West Bank & witnessed firsthand the horrors of #IsraeliApartheid. So I will speak up- I’m not here for anyone’s comfort
Read 5 tweets
Pleased to share ⁦@FarazFallahi⁩’s #MECFS video this time with English captions featuring some of my favourite German & Austrian names #LongCovid #MyalgicEncephalomyelitis #pwME #MedTwitter #MedEd #TeamGP #psychtwitter. A sobering watch.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe neuroimmunological disease that mainly occurs after infections (including COVID-19).

Please watch, like and share the video - help us to finally get attention!
Unfortunately, there are no therapies, hardly any research funds and no significant care structure. Due to COVID19 the number of sick people is increasing drastically.

Those affected demand:
Read 6 tweets
Day 823 of my #longcovid battle
a thread.
This will mostly be rambling, screaming out into the void as I've felt even more disconnected as my health continues to deteriorate.
Took cpl hrs to get this out & is all over the place but that's ok too.
"mild" case of covid February 2020 led to LC rearing it's ugly head by June 2020. In 1styear, I went from being healthy & active to suffering 100+ symptoms.
Each dr visit & scan found further degeneration & damage. I was met w dismissal & gaslighting from med community.
I found great solace & help in the LC communities on social media. It gave me strength to keep advocating for healthcare & finding ways to self manage symptoms until I could find a dr to listen.
I firmly believe I wouldn't have survived w out y'all.
Read 22 tweets
What I have learned since being unwell myself has destroyed any faith I had in my profession’s leaders. I used to think that deep down most senior clinicians acted because they had the best interests of the patient, their colleagues & society at heart. That illusion is gone. 1/n
Be it the treatment of those with #MECFS #LongCovid #Fibromyalgia #POTS #MCAS #EDS #HSD #PansPandas #Lyme #FQtoxicity #vaccineinjuries & other so-called invisible illnesses; 2/n
the refusal of senior medics to stand up & protect colleagues, the public & schoolchildren from airborne spread of #SARSCoV2 as they are too afraid to displease those in the ivory towers of infection control, @UKHSA & @NHSE management & @UKgovcomms; 3/n
Read 7 tweets
Myalgische Enzephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) ist eine schwere neuroimmunologische Erkrankung, die hauptsächlich nach Infekten (unter anderem COVID-19) auftritt.

Bitte schaut, liked und teilt das Video - helft uns, endlich Aufmerksamkeit zu erlangen!
Leider gibt es bislang keine Therapien, kaum Forschungsgelder und keine nennenswerte Versorgungsstruktur.

Bereits vor der Pandemie lag die Zahl der Betroffenen in Deutschland bei mehr als 250.000, in Österreich bei mehr als 75.000 Menschen.
Aufgrund von Corona steigt die Zahl der Erkrankten drastisch an. Im #Koalitionsvertrag wurde verankert, die Situation zu ändern - doch das ist bis heute nicht geschehen.

Wir Betroffenen fordern:
1) mehr staatliche Förderungen für die Forschung
Read 9 tweets
2 yrs ago, to raise awareness for the #MillionsMissing due to #MECFS, I started a 🧵 on how tragic chronic illness has consumed my life

But I was too sick to finish, & shortly after uninstalled Twitter. Trapped by illness, unable to advocate.

2 surgeries later... 🧵, 🎬 2

2017: I was Prof of #Epidemiology @PublicHealthUGA, researching #HIVprevention and #vaccine prep for emerging epidemics. I directed an epi training program @ICI3D. I loved my work & my amazing colleagues!

I was healthy & active 🚴🏄‍♂️ 🥁

Then, I bought a 🏡 and had it renovated. Jan 2018 I moved to the newly built master bedroom addition, I became sick.

⏩ 2 years to 2020. Water burst thru walls on 2 sides of my bed. Revealing walls, subfloor, crawl space filled with mold due to construction defects

Read 22 tweets
Next is Dr. @aucott_john on Lyme disease and infection associated chronic illness. Lessons from COVID Long Haulers and ME/CFS.
Infection associated illness is not new. #LymeDiseaseAwarenessMonth
Dr @aucott_john quickly noticed the symptoms of #LongCOVID were very similar to #LongLyme. Can occur in patients with mild illnesss. Something similar in how these diseases are affecting humans (P.S. Long-haul does not occur post-flu.) #LymeDiseaseAwarenessMonth
Patients with chronic illnesses are often disbelieved. It is difficult as there are no diagnostic tests to prove "Long haul" is real.
Read 16 tweets
⭐️ Let’s talk about ‘BRAIN FOG’ in POTS ⭐️ Also known as cognitive dysfunction.This can be difficulty concentrating, difficultly finding the right words, recall&thinking.Often described as a fuzzy feeling. There are lots of theories as to why, but this infographic is important 1/ Image
The red is the blood. It should NOT stop at the neck when standing! Gravity pulls it down, it pools in the lower body, less gets to the heart, the heart speeds up to compensate and the end result is often a rapid heart rate. 2/
It should be easy to see from the photo that if blood is not getting to the brain normally, that is NOT a good thing. There have been studies done on cerebral blood flow in POTS. This is just one… CBFV dropped by double that of controls in head up tilt 3/
Read 20 tweets
It has been an honour to walk alongside my friend & colleague of 21 years @BinitaKane & her daughter Jasmin on their courageous & inspiring journey. #LongCovid in adults children is real & serious. There are treatments available- sadly only for a fortunate few #TeamClots 1/n
(Everything I say is with the express permission of @BinitaKane). Jasmin is not the only child with #LongCovid who has been shown to have microclots & hyperactivated platelets. They are a consistent finding in kids & adults who have travelled for treatment to Germany & SA 2/n
Globally 100m are affected by this vile illness. In the U.K. alone this figure is estimated to be 1.8m, with 2/3rds reporting an adverse impact on their daily activities. 1% of primary & 2.7% of secondary school children fulfilled the criteria for #LongCovidKids 3/n
Read 17 tweets
Next speaker
Peter Rowe, MD: Lessons from ME/CFS that can inform Lyme disease as well as Long COVID
Professor of Pediatrics @HopkinsMedicine
#LymeDiseaseAwarenessMonth Image
Peter Rowe, MD
Postural Orthostatic Intolerance #POTS is very common in ME/CFS.
#LymeDiseaseAwarenessMonth ImageImage
Peter Rowe, MD
Common forms of orthostatic intolerance. Frequently the heart rate will be above 120 BPM. #POTS #NMH
#LymeDiseaseAwarenessMonth Image
Read 14 tweets
Ok. Another request, another 🧵. Today, we address the strained relationship between psychology, psychiatry and #LongCovid. Much of this may also apply to #pwME and other infection-associated chronic illnesses (h/t again @microbeminded2) and other “invisible” illnesses (1/n)
Psychology and psychiatry have a complex history with syndromic illnesses. Why? When illnesses are diagnosed on the basis of symptoms rather than “objective” tests, some clinicians will doubt the reality of the condition. Let’s start by psychoanalyzing them, shall we? (2/n)
This behavior is not justifiable, scientific or ethical. But it is also is not new: in the 1800s, tuberculosis was regarded by most physicians as the “disease of the sensitive” before tubercule bacillum was discovered, the “cancer personality” was touted for decades (3/n)
Read 22 tweets
Although I almost always keep my Tweets focused on weather, climate change, and related Earth system events, this thread is going to be a little more personal. May is #EhlersDanlosAwarenessMonth...and I have Ehlers Danlos Syndrome (hypermobility type). #hEDS (1/41)
Before continuing, I want to emphasize that I'm #NotThatKindofDoctor--I'm a physical scientist & science communicator, not a biomedical scientist nor a medical doctor. All the information and reflections in this thread are therefore either personal reflections... (2/41)
...or come from the perspective of a "highly informed patient." I do, however, strive to get the facts right, and offer links to various true experts in the clinical and research fields below. (3/41)
Read 40 tweets
Wie hängen eigentlich
#MCAS und

Oder warum #MCAS ein gemeinsamer Nenner sein könnte:
1. #PostCovid & insbesondere #LongCovid sind an sich keine Krankheiten, sondern rein beschreibende Begrifflichkeiten.

Das zu verstehen ist elementar, für alle weiteren Überlegungen, fürs Verständnis & wichtige (therapeutische) Entscheidungen.

#pwMECFS könnten davon profitieren
2. Post (nach) Covid und Long (langes) Covid beschreibt also erstmal „nur“, dass Beschwerden „nach“ einer Covid-Infektion auftraten, bzw. „lange“ anhalten. Es sagt nichts über die Krankheit, die dahinter steckt und deren Pathophysiologie aus.
Read 26 tweets
Ok. As promised, here is a super-🧵 on cognition and #LongCovid. This will be a combination of published material and things that we have observed in-clinic. This is not intended to be definitive nor epidemiological and so it is highly likely that your personal experience (1/n)
may deviate significantly. This is about my reading and experience of cognition and #LongCovid but from what I have seen shared in the comments of my tweet yesterday, it seems that much of this may apply to other infection-associated chronic illnesses (h/t @microbeminded2) (2/n)
such as #MECFS, #Lyme and #dysautonomia/#POTS to name a few. Let’s start out with naming. I try not to use the term “brain fog” because I don’t think it conveys the seriousness. People with LC are experiencing cognitive dysfunction that often results in cognitive impairment (3/n)
Read 25 tweets
@SJschmidt963 A reply in a thread 1/16
“Often occurs with LongCovid” does NOT exclude other associations NOR does it imply LC as the only cause. If this conversation was about Ehlers Danlos Syndrome, it would be equally valid to say that “dysautonomia / POTS often occurs with #EDS”. But it wasn’t, so I didn’t. 2/16
Here is a link to a peer review paper by Hannah Davis @ahandvanish et al showing the link between #POTS and #LongCovid : 3/16
Read 16 tweets
A question for people with #MECFS or #LongCOVID: in your experience, is post-exertional malaise a single phenomenon? Or is it possible there are distinct phenomena that are not being adequately distinguished, impeding understanding? #NEISvoid
With my daughter -- who has #hEDS, #MECFS, #POTS, etc. -- we have observed at least 2 and possibly 3 separate phenomena that all seem to fit the description of #PEM. Let's call them (a) "major crash," (b) "day to day PEM" and (3) "cumulative exertion PEM"
She has had 2 major crashes. These were biphasic events that appear to have caused severe damage lasting years. First major crash (2017) was what made us aware of her illness. She felt very hot in the morning. Then, some time after a long hike, she had whole-body chills/shaking.
Read 12 tweets
Are you neurodivergent? Does that include dysautonomia? Do you know viscerally the two are linked - but want to understand exactly how? I am composing a thread for you (yes, you) right this very moment. Stay tuned. #NEISvoid #ADHDtwitter #ActuallyAutistic #POTS #EDS
The manifestations of divergent neurotypes like ADHD are a complex function of dynamic external & internal* stressors. This makes the clinically defined subtypes (predominantly hyperactive/impulsive, predom. inattentive; combined type) largely inaccurate.
*such as dysautonomia
Two functions of the neurotransmitter norepinephrine or noradrenaline (henceforth NE) are relevant here. As a vasoconstrictor, NE increases blood pressure when the brain needs more oxygenated blood. NE also transports dopamine to the prefrontal cortex. Our adrenals release NE.
Read 15 tweets
Did I just read article on bon appetit telling ppl to not eat iodized salt bc it “tastes bad”? 🤦🏽‍♀️

Was looking up what kosher salt is & this article starts w desc iodized salt “iodine is a halogen & makes salt taste bad”

Do ppl in this country not know why we have iodized salt?!
FTR you need iodine in your diet so you don’t get horribly sick w an iodine deficiency that trashes your thyroid [look up goiter] & there aren’t great sources of dietary iodine available to many ppl & iodized salt is a v effective public health intervention
Like sure eat other types of salt too bc it tastes good [I love black salt aka Himalayan pink salt for example] but you should also eat iodized salt bc you need iodine
Read 16 tweets
A (LONG) thread for patients with #mecfs #longcovid expecting surgery and the #surgeons #anesthesiologists #crnas and #pacunurses caring for them. I'll share my recent perioperative experience. This is neither comprehensive nor medical advice, but I hope it helps. (0)
1. Recovery was a bitch. I've had general anesthetics before, even in the same organ system. This was not the same body undergoing #anesthesia.
2. Set Expectations: Physicians
Expect long lists of meds, allergies, requests, and questions. Listen to and engage with your patient. They may educate you. Anticipate a potentially prolonged and complicated recovery. This is not a fast-track. Respectfully, don't be a Dick.
Read 13 tweets
1/5 Weil diese Frage auftauchte, ich immer noch erschrocken bin, dass das nicht bekannt ist: ein kleiner #Servicetweet zu #FQtoxicity #FQAD und #MEcfs

FQtoxicity steht für u.a Nerven-, Sehnen-, Kollagen- Gefäss - und Mitochondrienschädigungen/Vergiftung durch Fluorchinolone (FQ)
2/5 Fluorchinolone sind eigentlich sogenannte „Panzerschrank“ Antibiotika, werden leider immer noch „wie Smarties“ verschrieben - auch bei den banalsten Infekten - vorzugsweise Blasen-, Nebenhöhlenentzündung, auch bei Lungenentzündung usw, nach und/oder mit Operationen u.v.m.
3/5 Aufklärung der irreversiblen Langzeitschädigungen erfolgt durch Ärzte nicht. Symptome wie Entkräftung, Herzrasen, Tachykardien #PoTS #MCAS #SmallFiber Nervenschmerzen, RestlessLegs u.v.m können sofort auftreten, aber auch zeitversetzt, oft ausgelöst durch weitere Medikationen
Read 8 tweets

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