Sea otter

@Pistol Thanks for response. I was asking this for raising awareness purposes. Really don't know what to say to people sometimes, so I say it is rarely diagnosed. According to Dysautonomia International POTS is not rare. Also on the following link it says POTS is common, POTS experts are rare. https://www.autonomicneuroscience.com/article/S1566-0702(18)30074-2/fulltext

I know POTS in not rare, it is rarely diagnosed. But I wonder how do they know it's not rare, that it's more common that MS, if it is rarely diagnosed. It doesn't make sense. Also somewhere it says some forms of dysautonomia are rare, then again that dysautonomia is not rare. It's confusing.

@Abe I totaly understand what you mean. I also have a lot of symptoms changing day by day for almost 5 years. Sometimes I think I will lose my mind because I feel so awful. All this physical symptoms are affecting my emotions. I was diagnosed last year so I am still learning how to survive every day, but it is not easy at all. Like we have a lot of diseases in one which we can control at all. Plus all the other problems that come with chronic illness... I don't think you are losing your mind. This is all part of POTS. What do I do when I reach my limits - usually rest or sleep. As I said I am still learning...

@albertspa who knows. Autonomic nervous system is complicated. 😊

@albertspa sorry about previous post, I figured out later that you are not asking why symptoms are worse but better.

Have you heard that the leading dysautonomia experts no longer subscribe to the theory of POTS subtypes? This is because most people with POTS present with features characteristic of several subtypes and patients should be treated based on their individual symptoms, not a specific "type".

@MikeO thanks for the info.

My opinion is that this test is more for doctors and researches. And I would have to pay for it. As I read everywhere it says this can be connected with POTS but needs more researches. I wish they know something more about it, then it would made more sense to do it. 😊

@Jyoti There is too much things to follow, we can't remember everything. 😊 Thanks for sharing.

@Jyoti Neurologist said just that some POTS patients have elevated those antibodies. Maybe this is "normal" test after diagnose because I know some other POTS patients that were also reffered. I am from Europe. I have heard there is some possible connection with those antibodies and POTS and also with AAG (autoimmune autonomic ganglionopathy). If you are interested please see following link related with those antibodies and AAG. https://www.dysautonomiainternational.org/page.php?ID=124&fbclid=IwAR3Ket7PBGRXBTAaNiOKn4R40ZNynad0DRxsKWr5eBKOaEDiOaQmOSsqwgM Also link about acetylcholine receptors where those antibodies were also mentioned. https://www.sciencedirect.com/science/article/pii/S1043661823001469?fbclid=IwAR2gaZyQrwg26hUnIsvGcHKtN8-Xr-ZThh4y03soNrCw3btypYPC6g6sbSY

Has anyone been tested for ganglionic acetylcholine antibodies - gAChR? I was referred to do testing. My neurologist said that some patients have elevated gAChR antibodies for some reason. Is it worth checking?

@Macho319 for me same thing as @Pistol wrote.

@Sarah Tee Thank you so much for taking time to explain. I guess 'adrenalin surge' is common name for this symptom among patients. But it's confusing as I see online everywhere it says adrenalin surge, I thought at first that this is official name for it.

A lot of people (including me) are experiencing "adrenaline surges". This is less known symptom of POTS but I think very important, especially for newly diagnosed. I have found at few places it is called adrenaline surge. But some are saying this is not real adrenaline surge. So how to call it? Is there proper name for it?

In the meantime I found this video about triggers... https://youtu.be/OsnooKbVpHA

We have a lot of triggers; like heat intolerance, weather changes, periods, stairs, large meals... Anyone can recommend some articles about dysautonomia triggers? Thank you.

Yes, rushing the getting up is worsening my symptoms. Usually I am taking easy until 11 am.

I don't know yet. I would like to rule out MCAS, but the thing is that I have to do bloodwork privately and then hope I will find doctor that knows something about POTS and MCAS relations - of course, depends of results. I am not sure that kind of doctor in my country exist. 😂

@Pistol thanks for answer. I am glad your tests were ok.

@Pistol Thanks. Have you ever checked histamine level in blood? There are also certain foods that make things worse for me. But it's interesting that when I feel better that food doesn't bother me so much. Then everything is better and easier.

Anyone with POTS checked histamine level? I know POTS can be connected with MCAS. But I also know some people that checked histamine level and it was fine, and they have a lot of reactions after they eat. So probably for them this is all "POTS fault".

@Horizons1 I have it. Eyes zoning out a lot, especially when I am tired (like I am overstimulated and need rest, I am aware of everything that is going on). I found out that the celiary muscles in the eyes are also controlled by the autonomic nervous system.

Wow, thanks a lot! I think I already sent them email for this and some other symptoms I have, but they told me this could be MCAS related and to find immunologist.

Yes, you are apsolutely right, similar problems everywhere in the world. Hopefully some things will change for better. As long as we are alive there is still hope. 😊 I am sorry that you need to drive such a long distance to Medical Center. Have a safe trip.