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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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2015 Heart Rhythm Society Expert Consensus Statement on the Diagnosis and Treatment of POTS

voner

Senior Member
Messages
592
I ran across this new paper. "
2015 Heart Rhythm Society Expert Consensus Statement on the Diagnosis and Treatment of Postural Tachycardia.......etc."

worth a read and something you can always take to your doctor.

http://www.hrsonline.org/content/download/24353/1071535/file/2015 HRS doc on POTSISTVVS.pdf

here is a table from the paper:

image.jpg


@Jonathan Edwards, note that the use of pyridostigimine is discussed.


any opinions?
 
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SOC

Senior Member
Messages
7,849
I have mild POTS and am set to have a jugular stent put in soon. I'll show them this first, thanks for sharing.
It does seem rather extreme for mild POTS. Have all the less-invasive techniques been tried and found unsuccessful? What led your docs to thinking a jugular stent was the best choice?
 

SDSue

Southeast
Messages
1,066
Does anyone know what the Class and Level designations mean?

For so many “experts”, and so much research in the past several years, I would have expected more. This is just the same old stuff prepackaged.
 

helperofearth123

Senior Member
Messages
202
It does seem rather extreme for mild POTS. Have all the less-invasive techniques been tried and found unsuccessful? What led your docs to thinking a jugular stent was the best choice?

Well I have moderate/severe ME/CFS as well, mild POTS has been found to be a part of what is going on with me. I had a couple of balloons inflated (venoplasty) in my jugular and the first time it hardly did anything but after the second one I felt quite a lot better, so I'm optimistic. Still, I'll keep this in mind. Maybe my POTS is mild enough for it not to be a major factor, though of course its all part of the same illness.
 

SDSue

Southeast
Messages
1,066
Well I have moderate/severe ME/CFS as well, mild POTS has been found to be a part of what is going on with me. I had a couple of balloons inflated (venoplasty) in my jugular and the first time it hardly did anything but after the second one I felt quite a lot better, so I'm optimistic. Still, I'll keep this in mind. Maybe my POTS is mild enough for it not to be a major factor, though of course its all part of the same illness.
I’m curious as to how you ended up with a venoplasty. If you don’t mind, I have a couple of questions.

What testing led your doctor to doing a venoplasty?
Was your diagnosis something other than / in addition to POTS, like CCSVI?
If you got little to no effect from the venoplasty the first time, why did you repeat the procedure?

Thanks so much.
 

SDSue

Southeast
Messages
1,066
Yes, it's a codeword for getting psychologists, social workers etc. involved.
Would social workers be a bad thing? Or would they actually help us get the services we desperately need, such as home health? I don’t know enough about the field to make an educated comment.

@Gingergrrl might be able to weigh in on this one?
 

Sidereal

Senior Member
Messages
4,856
Would social workers be a bad thing? Or would they actually help us get the services we desperately need, such as home health? I don’t know enough about the field to make an educated comment.

In normal circumstances I would agree, but in anything to do with ME the role of allied health professions like psychology, social work, occupational therapy, physiotherapy (physical therapy) is often quite abusive and aimed at getting the patient to increase their activity levels.

Check out the article. There's a whole subsection about the alleged role of anxiety and somatosensory amplification in perpetuating POTS symptoms.
 

SDSue

Southeast
Messages
1,066
In normal circumstances I would agree, but in anything to do with ME the role of allied health professions like psychology, social work, occupational therapy, physiotherapy (physical therapy) is often quite abusive and aimed at getting the patient to increase their activity levels.

Check out the article. There's a whole subsection about the alleged role of anxiety and somatosensory amplification in perpetuating POTS symptoms.
I saw that. I kinda hate this whole article. I find it demeaning and superficial. Likely the participants got an all-expense paid vacation, attended a few coffee klatches, and paid someone to ghost write the thing.

I’m disappointed to see Vanderbilt, Cleveland Clinic, and Mayo Rochester involved. Shame on them. The others don’t surprise me.
 

Sidereal

Senior Member
Messages
4,856
I saw that. I kinda hate this whole article. I find it demeaning and superficial. Likely the participants got an all-expense paid vacation, attended a few coffee klatches, and paid someone to ghost write the thing.

I’m disappointed to see Vanderbilt, Cleveland Clinic, and Mayo Rochester involved. Shame on them. The others don’t surprise me.

Total shit, I agree.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Would social workers be a bad thing? Or would they actually help us get the services we desperately need, such as home health? I don’t know enough about the field to make an educated comment.

In past decades, yes, social workers did help folks find the necessities of life. Before we met, my former partner was a county social worker who went out into the community to look for people to help. There now seems to be very little of that kind of activity. Social service agencies are not interested in helping people. If there is no one to bill, it's, "Sorry, we're not going to help you. Call someone else."

At the local welfare office the social workers are mostly data entry clerks. They seem to know nothing beyond what the computer tells them. Even in my tiny community they've never heard of any other agency or group or individuals that are helping people.

I did have a case manager for a while. To me, she was a classic social worker who tried to figure out what clients needed and how best to help them. But as soon as Medicaid quit paying the agency, she was gone. The agency did absolutely nothing to help me find another way to get the same services - 'cause there was no one to bill.

I've never had a social worker in the context of a healthcare provider. Maybe they are actually useful for something besides telling people "I can't help you".

Instead of a system organized around how best to help people, it is organized around "for what services can we bill Medicaid and Medicare?"