Top Tweets for #HyperPOTs
I can confirm, Xolair majorly improved my most debilitating #LongCovid Sx, obviously secondary to MCAS - #HyperPOTS Sx and unrefreshing sleep
The top treatments are (on a scale of -5.0 to 5.0):
Omalizumab/Xolair: 0.69 - 4.22 (not significant)
IV Saline: 1.84 - 2.14
Maraviroc:1.23 - 2.30
Ketamine: 0.93 - 2.40
Enoxaparine or unfractionated heparin: 1.00 - 2.29
Ivabradine: 1.29 - 1.85
2/
@tessfalor @organichemusic If not covered already, I would add:
Xolair, as #MCAS is big part of #LongCovid for many (major improvement in unrefreshing sleep and HyperPOTS secondary to MCAS)
Guanfacine for #HyperPOTS (also resolved my brain fog 100%)
Would also be interesting to see why exactly some patients with #LongCovid develop “only” #MCAS => #HyperPOTS, and for some MCAS will contribute to ME (PEM)
2) A study led by dr. Rob Wüst from Amsterdam University will study immune cell infiltration on muscle tissue and mast cell activation during post-exertional malaise. Focus is on how immune cells affect muscle recovery.
Not to mention that sympathetic activity itself can trigger mast cells via norepinephrine => #MCAS and #HyperPOTS to trigger each other ad infinitum in a closed feedback loop, which has been known in literature since 2005 Shibao et al, but out German “experts” never bothered
@longcovidlabs @makemevisible24 Yes, I have to take it continuously. It also calms down my #HyperPOTS so definitely feeling lucky to be such a strong responder to this medication.
Guanfacine XR is definitely keeping me employed.
Immuneadsorption gave me temporary (8 weeks with gradual loss of benefits after week 6) #MCAS remission, which automatically meant that unrefreshing sleep and #HyperPOTS was gone, ie majority of my #LongCovid
Clear that autoimmunity is at least partially responsible for my #MCAS
The goal is to define and phenotype the population that could potentially be candidates for such procedures.
From past experience, we know that patients with a high degree of inflammation tend to respond well.
Not to mention that calling LC = ME will make some of us, who have syndromic #LongCovid w/o ME will fall through the cracks and not be taken seriously
I assure you that my syndromic LC, consisting of #HyperPOTS and #MCAS triggering each other, is incredibly debilitating and…
@sunsopeningband How common? Not all #LongCovid patients have PEM and therefore don’t have #ME
I have syndromic LC, but it’s #HyperPOTS and #MCAS triggering each other in a vicious circle - I have to exercise regularly or my POTS gets notably worse (already bad - 80% of time lying down)
@Gmwetz Been on it for 8 months, sadly no change to my #LongCovid #HyperPOTS #MCAS, gave it up (also no change upon stopping)
Sincerely hoping that proper phenotyping is incorporated in study design to identify biomarkers for possible responders
@useless_priest Tell that to my 3+ yrs #LongCovid ass, who was lucky enough not to get #ME, but scored debilitating #HyperPOTS+#MCAS combo that has gotten only worse over the course of LC
@NeurologistMom I was misdiagnosed with ME-type #LongCovid, based on delayed worsening, unrefreshing sleep, orthostatic intolerance and >50% loss of functionality
Turns out all my symptoms are due to #HyperPOTS and #MCAS triggering each other in a positive feedback loop…
@sunsopeningband Not all syndromic #LongCovid is #ME.
Mine is debilitating #HyperPOTS #MCAS combo and I actually have to exercise regularly or my POTS gets even worse
(already horrible orthostatic intolerance and spending 80% of time lying down, while being able to run, swim, cycle)
Not assuming diagnosis of @DelbertHosemann
Just pointing out what autonomic dysfunction can look like when someone has an “episode”. 👇
Guess what “disorders” have increased over the past few years?
#HyperPOTS #Dysautonomia #HyperPostOrthostaticTachycardiaSyndrome
NEW: Mississippi Lt. Gov Delbert Hosemann collapses while presiding over the state Senate chamber.
He was reportedly conscious while being tended to by medical staff, according to local reports.
"Lieutenant Governor Hosemann is doing well and in good spirits. He appreciates all of the medical staff and is eager to return to work," his office said.
Hosemann is 77 years old.
@MattMcGorry @lgoshen I did #ImmunoAdsorption, which is a kind of apharesis used for autoimmune diseases such as MS, as it removes autoantibodies from blood
It significantly, but sadly short-term (2 months) improved #MCAS, which is main part of my #LongCovid (#MCAS=>#HyperPOTS and unrefreshing sleep)
Yep, nothing worse with #HyperPOTS, than being extremely exhausted of many nights of unrefreshing sleep in a row, yet totally losing all sleep drive and waking up shaking with adrenaline
Literally feels like zombie overdoing coke and speed simultaneously 24/7
I miss being sleepy. I miss waking up slowly and gradually instead of suddenly being wide awake after barely sleeping, like it’s the middle of the afternoon at a party on speed.
#insomnia #dysautonomia
@useless_priest As a person who doesn’t have #ME (exercise helps), but have debilitating orthostatic intolerance #HyperPOTS and #MCAS causing horrible unrefreshing sleep, it’s worth looking into other causes, rather than just shoving it under PEM
Sitting, eating and heat are also #POTS triggers
@NeurologistMom Guanfacine XR completely resolved my not so mild (job-threatening) #LongCovid brain fog. While on it, I am cognitively at precovid level.
It also helps with #HyperPOTS
@PaulRKeeble Severity of BPM increase cannot be used tell apart between #POTS phenotypes, per POTS literature
It can spike severely in every phenotype, but we classify as #HyperPOTS only when spike in BP or catecholamines (norepinephrine)
@PaulRKeeble Very weird formulation of hyperadrenergic #POTS phenotype
In literature, Dx criteria for #HyperPOTS are either > +20/+10mmHg spike in BP or catecholamines from blood (usually norepinephrine) on tilt, not BPM increase
@BhupeshPrusty Not everyone with “syndromic” #LongCovid will experience PEM and have ME-phenotype of LC
My LC is basically #HyperPOTS and #MCAS triggering each other in a vicious circle, nevertheless debilitating with orthostatic intolerance forcing me to spend 80% of life lying down…
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