PoTS in Scotland

[2000RedRose]

Does anyone know if a PoTS specialist Cardiologist visiter any Scottish hospitals as I know there are none in Residence and I require a consultancy as I have only been treated for AFib over the last 3 years in spite of the fact I have collapsed twice and ended in A& E Depatments where I was diagnosed as having Postular Cardiac Syndrome

[Physalis]

Apparently there are no PoTs specialists in Scotland. You could write to Sanjay Gupta, I think he does respond to emails.

You could look at the potsuk.org website There's a lot on there. And there's a whole page on medicines.

Have you had a tilt table test?

Tessa

[2000RedRose in reply to Physalis]

Thank you for replying Physalis.I did look at Sanjay Gupta’s YouTubes and the pots.uk.org website ,but no info regarding consultancies in Scotland.—and no I haven’t had a tilt table test.I will probably send an email to Dr.Sanjay Gupta .—Many thanks for all your suggestions and concern. I do appreciate it.— very best wishes.Red Rose.

[CDreamer]

Did you check the list on the STARS - link I posted on your previous thread?

Specialist in Scotland - I think you will need to accept you will have to travel or accept virtual consults. potsuk.org/specialists - They are very few and far between and very difficult to get to see. The Queens Square Autonomic Centre have an amount of info on their site of how to refer and they and Queen Elizabeth Birmingham seem to be the specialists, so many people trying to see so few specialists.

uclh.nhs.uk/OurServices/Ser...

Quite a few local hospitals will do a Tilt Test but you will probably need a positive Tilt Test before you can get a referral to get see anyone.

You may find the AA online Education on PoTs useful:-

heartrhythmcongress.org/pro...

I found resolution purely by accident - I have a neurotransmitter deficiency so was prescribed Pyridostigamine - it was a while before I correlated that I no longer suffer PoTs. I communicated with hundreds of people all over the world about PoTs and outside of US and Israel and London - not much help available.

Hope some of that helps

[2000RedRose in reply to CDreamer]

Well CDreamer, you certainly pulled out the stops to try and help me .I will use all these sites you have kindly supplied and hope I find an inkling as to what I should do next .—It’s very hard, as you obviously found with your own condition ,but so glad as it all seems to have been worth your while.—My GP gives me a telephone appointment ,then I hear no more ,so it’s encouraging to have someone who wants to help the little QOL I have left .— so many many thanks .It’s very much appreciated.

Warmest Wishes - 2000RedRose

[CDreamer in reply to 2000RedRose]

I had the same difficulty so your query resonates so much and believe you me, there are many similar experiences all over the world which is why it’s so important to share information through forums such as this.

One of the funniest things (In hindsight) that happened to me was I awoke one morning in 2012/13 to find I was in NSR feeling good and then tried to get up, well that didn’t happen as all went black. Lying down - no problem - lift head off pillow - HR up to 200, BP crashes and all goes black. After 72 hours of this my very kind neighbour whom my husband called in as she is a nurse just said 999 so with blue lights on - off I went.

In A&E, hooked up to ECG and Obs monitors - Doctor comes in - now what’s the problem - looks at monitor and all is well so says doesn’t think there is anything amiss at which point I rise to sit up and they pick me up off the floor. Never seen that before - do that again. Repeat. Doctor goes away. 10 minutes later another Doctor enters - same routine. By Doctor NO10, accompanied by a bunch of F1’s, as I am somewhat of a hospital conundrum and spectacle so word has travelled, I am somewhat tired of this game and so I just tell them it’s dsyautomnia now what are you going to do about it! All look blank and go away. I’m admitted to Acute Cardiac ward were I am mostly comatose for 2 days. Suddenly awake on 3rd morning perfectly OK, apart from IV fluids & monitoring in and out via catheter, no treatment and after various screenings including - can I walk up and down stairs OK - yes - well you’re discharged. No referral, no follow-up and no explanation. That was circa 2012 so things have improved a little but not to an extent that GP’s are aware.

Go well, go informed with information and literature and don’t take no for an answer.

Good luck and do let us know how you get on.

[2000RedRose in reply to CDreamer]

So you’re wishing ME Good Luck🍀CDreamer after your nightmare that is so Crazy ,Serious ,Incredible ,but also as you say ,—Laughable.I do realise NOW that this condition appears to be largely ignored by Doctors and Cardiologists unless a PoTS specialist and there don’t seem to be many of those.Your encouragement brightens my day ,so again many thanks .All the very best to you and a happy and pain free future .2000RedRose x

[Physalis in reply to CDreamer]

One of my grandsons, he's 32 now, became ill four years ago. Rather typical of this kind of thing, virus, then type 1 diabetes and so on. He had a tilt table test and almost passed out so confirmed a heart rate issue. That was May last year. It has all dragged on and now they are waiting for an appointment with the cardiologist and endocrinologist.

I'm now on the case!! Finding out all I can.

My son, his father, has ectopics and my daughter wrote recently "The drop in BP happens with me every time I have a big general anaesthetic - It takes at least two days post op before I can move from a horizontal position without fainting. Last time they insisted on moving me to change the dirty sheets that I came back from theatre on. I said no but they insisted that I would be fine in the chair...I wasn’t and ended up on the floor completely out of it making them all panic somewhat!!! They call it a vasovagal episode."

It may be genetic! Four hours after my ablation, they stood me up and my blood pressure fell and it took an hour and a half before it came up to a level when I could go home. Not sure how often this sort of thing happens. Maybe it's common.

[CDreamer in reply to Physalis]

A lot more common than many realise. I found people so much worse off than me who live every day in that condition and just cannot find help because basically very little exists. Dr Grubb is the man in the UK but only seems to see young females with multiple conditions. Having an autoimmune condition with PoTs + arrythmias + other conditions such as Ehlers-Danlos (genetic linked) and hypermobility is quite common and more usual amongst young females than males.