Anyone heard of POTS disease?

[Curiousmama]

A lovely friend of mine has it. She's suffered from ME for years but the consultant is now wondering if she was mis-diagnosed with that? She does have POTS. I just hope there's something to help? Does anyone know of a postive story re:POTS?

Bumping for you.
I presume your friend has Pots syndrome (not Potts disease which affects the spine I think). I have heard of it (because I have problems with postural tachicardia - which is slowly improving) - but do not know much. I suppose the good thing is that once it is correctly recognised it can be treated as a separate thing to ME. There are medications that can help. Also I think there is greater understanding of Pots ( and for Pots IYSWIM).

I am a lurker here but I have NCS, a related dysautonomia condition which presents with similar symptoms, so I felt a little bit like I might be able to help.

magso is right, the fact that your friend has been given a POTS diagnosis means that they may now be able to work on her symptoms. It will probably still be a long road while they figure out what medications will work for her. If they manage to figure out the right combo, there is no reason why she can't have a much improved quality of life. There is no 'cure' for POTS but there is a lot they can do for it iyswim. It's a chronic condition but not a disease.

She might have a difficult time with some doctors, I know I have, as it's not that commonly diagnosed a condition, but I guess she'll be used to that having had an ME diagnosis.

www.dynakids.org is aimed at young people and parents of young people with dysautonomia conditions - however the information is still good and valid for adults, and the resources page is very helpful with links to some useful medical articles.

I hope your friend gets a great doctor and starts to feel better really soon.

Thank you both. Yes it is the syndrome sorry.

It's just a waiting game right now. I hope she gets some good help soon. She feels it's been brought to the fore because she's been caring for her new grandson, her dd took poorly.