judi_helen wrote:Hi there,
We worked out that my daughter - then 17 and known EDS probably had PoTS. There is an organisation like HMSA for people with syncope and PoTS. We got some names of doctors from them. I'm not sure I can name the group on the forum but you will probably find them if you Google PoTS. My daughter was referred to the local cardiology dept and from them to a consultant for elderly medicine. Apparently because they specialize in falls with unknown causes quite a few PoTS doctors are care for the elderly consultants.
It was a bit strange sitting in his out patients waiting area but he was super. He explained that PoTS has to be managed not cured and so every decision would be jointly made between my daughter and him (not me, quite right!). He asked her to bring another adult with her who observes her when she has symptoms - could be me but not necessarily. That went down very well as she felt she was being treated as an adult not a child. Needless to say, I've been invited to each appt. When she was reviewed, he gave her 3 options - carry on with conservative management, take medication to raise blood pressure, take medication to dampen pulse rate. He discussed the pros and cons of each and asked for her opinion. When she asked for medication to dampen the pulse rate he said, ' I suggest we try Ivabradine. Go home and look it up on one of these sites checking the side effects etc and ring my secretary to let me know what you think'. I wonder if he does that for all his patients.
Her PoTS is now much better controlled, though it was worse last year in hot weather so we will see what the summer brings. I think this doctor's approach really helped, especially as my daughter is off to uni in September and wants to feel she is more independent.
We are near Birmingham if that helps we can ask the moderator how to share the doctor's details off the forum
hope that helps,
Judi
This is what puts me off spending money to see any one, I dont need to be told I have something else incurable Id rather try to cure it myself- it makes me sick to gut TBH that medicine is so little integrity left their happy to just cash in on big pharma while the rest of us are left to suffer or get lectured about how bad it is for us to seek " alternatives " they fail to provide.
and please keep in mind the try "staying on topic" rule when answering, so please no "general pharma industry discussion" etc( you could pm me if you fancy that) but if you found any alternative things that do help your pots, autonomic dysfunction issues do let us know.
