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@rvallee , I'm not an expert, but in all the lectures and articles by "proper" autonomic experts, specialised exercise is recommended for POTS in order to: address loss of condition due to being unable to undertake normal activity after symptom onset, especially given that the average diagnosis...

Unfortunately one of the author's names has been spelled wrong in the journal: It is Prof Visser, not Viser. Yikes. (Have written to journal about this.)

I was about to write to some of the researchers and ask them about the different placement of the ultrasound probes when they sent a letter to the editor of a journal that answers my question. They say that both methods are good, but placing the probe on the cartotid or vertebral artery has the...

Of no scientific note: the company has changed name to "Lumia". The press release doesn't say why.

I would really appreciate it if someone with access to the full article could let me know how long the patients were tilted for, and how long the reduction in tachycardia lasted afterwards, if that information is given in the study.

Nothing scientific to say, just that this letter makes me and my daughter (who has OCHOS) very happy. I also learned a few things, and it answers my question about the difference between transcranial and carotid/vertebral measurements (they are both valid, with a slight advantage to the...

@SNT Gatchaman , thank you so much.

And there is also mention of “endothelial stabilization”, which sounds like it could be helpful in POTS. https://www.tandfonline.com/doi/full/10.1080/17512433.2018.1412827 (Behind paywall)

I can’t find it again, but I read an article in which a researcher from the early days of IVIg described how they used IV albumin as a placebo, then were surprised to discover that it wasn’t inactive in terms of immune-modulating effects when they analysed blood samples. [Link now added below]...

I think the researchers acknowledged this somewhere, but albumin has immune-modulating properties, so it’s not an ideal choice as a placebo.

I believe the type of hypovolemia that seems to occur in ME/CFS and POTS does not show up in standard blood tests because there is often nothing wrong with the ratio of components of the blood, there’s just not the right amount of it. To measure blood volume, you need to use a tracer. Funnily...

My daugher obtained a prescription for LDN from her rheumatologist, somewhat to her surprise, but now she is feeling a bit iffy about it. She hasn’t started it in any case because she is about to have some testing that has a washout period. She is changing to a new autonomic specialist soon...

I don’t know whether doctors ever embraced this aphorism from William Osler, but it always comes to mind for me when my daughter is dismissed. “Listen to your patient, he is telling you the diagnosis” I just wonder what all the dismissiveness is about. You could speculate that it’s about...

@Ash , sorry, I forgot to check the date of your post.

@LJord , that’s great to hear.

@Ash , perhaps you could try to have your specialist persuade the people doing the tilt table test to add a Doppler ultrasound scan. If the hospital or facility does venous Doppler scans, they could potentially do your carotid artery before and during the TTT. I have found out recently that...

@InitialConditions , thank you, will have a look there.

Thank you, @Arnie Pye , I will have a look there.

@Jonathan Edwards , I thought that might be the case (that this forum is unusual). I also thought that there might be some good auto-immune knowledge here. I will have a stab at asking a couple of questions and see how it goes. I am afraid I am very much a beginner on the topic.

My daughter has started seeing a rheumatologist, and I feel I need to read up a bit on autoimmune conditions and ask some newbie questions. Is there a forum similar to this one for autoimmune conditions?