POTS (Postural Orthostatic Tachycardia Syndrome)

[ShonaGreen]

Hi, I'd like to know if anyone here also has POTS? I had my first appointment with a rheumatologist yesterday, she thinks I may have POTS. I did a standing test and heart rate increased by over 30+ beats per minute which is one of the main symptoms, along with dizziness when standing up, hands & feet being cold and discoloured, fatigue, headaches, shaky legs, and lots more.

I hadn't heard of it before, will be having a TILT test to confirm diagnosis. It's interesting as the symptoms are very similar to thyroid symptoms, with main difference being that fast heart rate and other symptoms are relieved by lying down.

[cwill]

Hello! I have severe POTS so am living lying down whilst the NHS slowly grinds on. I hope the tilt is performed well and gives a clear outcome. Welcome to another misunderstood diagnosis.

See POTS UK for most info and also the Royal College of GPs EDS Toolkit, a source relevant to doctors and with a section on POTS. A tilt should be with no meds that could affect the result, no food for 4 hours, no drink for 1 hour. You should also be prepped and allowed to rest to get to your rest level HR before they start, a section that is regularly mishandled. Wear loose layers and take spares as we get hot and sweaty quickly whilst this test may take you to a fairly extreme physiological state.

Also check out Dysautonomia.

[ShonaGreen in reply to cwill]

Hi cwill thanks for your message. I’m sorry to hear you’ve been so unwell with POTS. I tend to have dips when I feel rubbish and can’t do much, usually after a period of being busy or more active than usual. But I did think it strange that I would feel OK if sitting or lying down, main problem is when standing up and moving around. I’m used to running or exercising most days so I find this very frustrating. But then I can have weeks where I’m feeling OK, but still have dizziness when standing up, fatigue and heavy legs, but at a lower level so more manageable. I’ve just thought it was due to thyroid issues and being under medicated as symptoms so similar.

Also seem to have low cortisol and DHEA levels and understand this can be linked to POTS too?

Thanks for the tips about prepping for the Tilt test, I’m not sure when this can be done as rheumatologist needs to find somewhere in Devon that still does it. When you said not to take any medication 4 hours beforehand, would this include a Levothyroxine too?

Have you had any treatment or medication that helped you? It sounds like it’s a bit of a try this and see if it works type of situation? My thyroid levels still need to increase to get to optimal levels and making sure that taking supplements to get vitamins and nutrients right too. So long as I can start to feel like myself and be active again then I’m willing to give anything a try! I can imagine that you feel the same way too, thanks for the helpful info, it’s much appreciated, take care.

[cwill in reply to ShonaGreen]

Unfortunately even if diagnosed POTS drug drugs are off license so there may be an issue of getting a trial from a cardiologist and then a consistent prescription from hospital or GP. My CCG won’t allow prescription of my drug. Think there is someone good in Plymouth but it’s normally a cardiologist that assesses and prescribes, you need detailed heart assessment. Pots UK have a specialist list on their website.

Re tilts and drugs yes levo is fine before, more relevant if they prescribe before testing. Tachycardia is notifiable to DVLA as is syncope/fainting.

We are supposed to do recumbent exercise on land or swimming can be good but beware flushes immediately after with BP and HR variations. I have an omron BP machine and a polar a370 heart rate monitor so that I can track my condition and send data to my consultants. Collecting our own data is really helpful.

Yes pursue the dose adjustments and all extras as the waits for full assessment and treatment are long. Your Rheumatologist sounds like a keeper. Another note: Sjogrens Syndrome can be a route cause of POTS so beware if you start to show any signs, my GPs weren’t aware of Sjogrens or the link.

[JGBH in reply to cwill]

What drug were you prescribed?

Also are you not allowed to drive because of POTs?

Are you feeling better?

[cwill in reply to JGBH]

I now have ivabradine and midodrine, early days for the latter. I can sit up in bed and get food more easily but still very disabled. Energy levels are much better as they have lifted the dreadful fatigue and dulled my high BP and HR readings. So awake and alert, more upright with class 3 compression tights and hoping for more from the dose adjustments to come.

Re driving most of us that don’t pass out need to inform the DVLA and wait for them to consider the info provided and clear us to drive, maybe with extra info from the consultant. Those of us the faint or have an out of control HR and BP will not be safe to drive. I’ve been living lying flat so driving is as a trip to the moon but am in a rural area so very aware that driving is highly desirable to living here.

Getting there very slowly thanks.

[JGBH in reply to cwill]

Thanks for your reply. You’re having a rough time. Do hope the midrodine will help soon.

[bantam12 in reply to cwill]

What happens to your blood pressure when you stand up ? My GP is suggesting I might have pots because my systolic drops by 20-30 and I get really light headed, I also have atrial fibrillation so difficult to know if that's causing it.

[cwill in reply to bantam12]

I don’t have my definitions to hand but orthostatc intolerance is the term for a drop in systolic BP without the consistent sustained 30 BPM rise of POTS. But ideally you are tested over 10 mins with readings very regularly.

My HR on standing was 120-170 and BP sytolic was over 150, diastolic around 120. My readings fluctuated over the test period remaining way over normal range. I can still get a 150/120 reading with my meds.

[cwill in reply to cwill]

I would suggest being referred to someone POTS experienced as the definitions are not hard and fast in all cases, as treatments can be similar or the same. Most good ones are interested in the root cause of the symptoms. I hope you find someone to help.

[bantam12 in reply to cwill]

Thanks, doing my own bp both systolic and diastolic drop on standing and keep dropping for at least 5 mins but I sometimes don't get symptoms until after about 10 mins, the sudden drop from 171/81 to 101/70 is bothering my GP, heart rate can be fast anyway with the AFib plus the anxiety of thinking I'm going to hit the deck !

First on the list of possibles is addisons then pots, I've been referred to an Endo who specialises in adrenals and pituitary so it's a start, I already have a cardiologist so can see him if Endo proves unhelpful.

Thanks again for the info, your situation sounds awful, I hope the meds work very soon 🤞 I live in a very rural area as well, no shops or anything for miles, thank heavens for deliveries !!

[cwill in reply to bantam12]

Hopefully they do an echo, 24 hr holter, 24hr BP, tilt test etc to determine the issues. I had autonomic testing and an MRI.

Oh yes the lovely rural areas where you know the delivery people by name and better than any neighbours. 👍

[bantam12 in reply to cwill]

I've had all those done, 14 day monitor picked up the AFib and 2nd degree heart block but it was done before this BP thing started, I am apparently "complicated " and already seeing 4 different Consultants !!

Hmm rush hour here is 2 tractors and a herd of cows 🤣 wouldn't change it for anything.

[cwill in reply to bantam12]

Im up to 8 consultants this year with national specialist for POTS and MCAS. Don’t talk to each other so keeping everyone in the loop is difficult esp as they all expect to see test result data but they have all been needed to get to the detail of the issues. Many years ago when I was first ill my resting HR was 100 and the surgury gave a 24hr holter: atrial fib of no significance. They missed pots completely. Hope they repeat the lot for you.

[Cat04]

Hi Shona, just read your post. If you are in Devon you may like to see Dr Jamie Fulton at Derriford who has a special interest in POTS. Fibromyalgia and POTS often go hand in hand so that may cover some of your symptoms but the rheumatologist should be able to sort you out regarding that potential diagnosis. Good luck.

[ShonaGreen in reply to Cat04]

Thanks Cat04, that's good to know. I'm seeing the rheumatologist again in Sept and hopefully she's found somewhere that does a tilt test, sounds like Derriford might if they have a specialist there.

[JGBH in reply to ShonaGreen]

I was told by an eminent cardiologist that everybody who has a tilt test will show problems, absolutely everyone. So not all that reliable. I also understand one has to report the results to DVLA, they get in touch with cardiologist and one cannot drive. If it improves with drugs then one might be able to drive again. Certainly not an easy situation for anybody.

How are you feeling now?

Best wishes.

[MoonDust11]

Hi all, sorry for hijacking your post. I am also on this route. I was wondering which page is best to join for Pots related stuff?

[ShonaGreen in reply to MoonDust11]

Hi MoonDust11 , sorry to say but I don't know if there is a page for POTS. Hoping someone else might know?

I'm going around in a circle at the moment, waiting to hear back from the hospital about having a tilt test, but not sure they'll do this due to mixed results from lying to standing tests. I still have a lot of POTS symptoms, especially dizziness when standing up, headaches and faster than normal heart rate so can't do any cardio exercise. But it's so tricky as these are similar to hypothyroid symptoms so it's hard to know what's causing what, hence the reason why I'm keen to rule out POTS or not!

[ShonaGreen]

Hi MoonDust11 , how are you doing? Just an update, I had a tilt table test last week and met all the criteria for POTS. Heart rate went from 75 to 117 as soon as I was stood up, felt very dizzy, had blurry vision and thought I could pass out but I didn't thankfully. I was standing for 20 mins and heart rate stayed around 110 all that time. My blood pressure increased slightly when I was first stood up then stayed normal, and heart rate and blood pressure all returned to normal when I was laid back down,

It was the Rheumatologist that eventually referred me for the tilt table test, but it took some convincing as the last standing test I had showed normal results. But I was determined to either rule out POTS or deal with it. The consultant doing the test said that she'll send results back to the Rheumatologist and just waiting to hear back from her. Not sure what happens next, to be honest I was surprised at the results of the tilt table test, so hopefully will hear some news soon!