I am still in the process of waiting for tests but have unofficially been diagnosed with POTS. I have been having very regular faints, pre faint episodes, rapid + strong heart beat resting and particularly standing, along with things like general weakness and exercise intolerance for the last few years. Doctors first thought it was due to overactive thyroid which is now sorted so have been passed on to Cardiology who from my own blood pressure and pulse records has told me I almost certainly have POTS but need tests done to officially diagnose and check nothing else is going on.
However in keeping these records I have noticed that often when I lie back down after things such as stairs (or sometimes after just lying) my pulse is dropping suddenly from well over 120 to around 50 within 5-10 seconds and with this I have suddenly been feeling faint as well as quite a heavy pressure feeling on my chest and complete weakness. The Sao2% on my monitor can often drop to mid 80's as well. I have been unable to measure the worst times but now suspect this is what is happening again. I can apparently become completely unresponsive yet I am still vaguely conscious just unable to move or respond at all, normally for about 15 minutes but up to a couple of hours (apparently one of the more extreme symptoms of POTS when mentioned to doctor). My heart rate often goes back up to normal sooner than I recover but generally I feel much better as it goes back up. But what I'm wondering is, is it normal in POTS for my heart rate to drop quite as low as that when I am definitely not an athlete at the moment and when occurring with those symptoms? My current normal resting pulse rate is about 75 (70-90) so it is much lower than recently (a few years ago when fit and healthy around 60 was normal for me).
So I'm wondering if this is normal with POTS or if it is something different and whether I should be talking to the doctor about it?
Thanks!
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SophieM95
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If you are having these symptoms now, especially the feeling in your chest, and the low Sats, I think ***ring 111 and describe your symptoms***.
It is usual for POTS tachycardia to be relieved by getting your feet up/lying down, so you should be feeling better not worse when you lie down!
(The exception would be hyperadrenergic POTS, but I am assuming here that that's not the type you've got, as it is rarer).
I am guessing you know from experience that your symptoms improve with lying down, and that you are posting this because there is something different going on.
POTS symptoms can vary person to person, but in my experience I have not had the very slow heart rate on lying down.
(I have a POTS diagnosis on tests from the Autonomic Unit at the National Hospital for Neurology and Neurosurgery, and my POTS is the type you get with Ehlers Danlos/Hypermobility Syndromes).
Recently, (with completely different symptoms from yours, but causing me concern), I rang 111 for advice. (I expected they'd give me a bit of reassurance or maybe tell me off for wasting their time). They sent a paramedic to check me out, and an ambulance! The symptoms turned out not to be POTS, and I needed to be in hospital.
These paramedics are very well trained and skilful, and could make sure you are ok, and if not ok, treated, fast.
If you have read to the bottom, then I would advise that if you are still getting these symptoms, GO GO GO! Get checked out.
I had thought about ringing but I think I'm more worried about the over reaction they're likely to have if I mention the pain/pressure! The other problem is I am not able to talk or think when it's happening so wouldn't be able to ring at the time?
Yes generally I am much better once I lie down but sometimes I'm not and this seems to happen, I wasn't sure if it was just accidental over correction or something else (I hope not!).
But thank you again and for your experience, I guess it could mean it's not because of the POTS and worth mentioning when I finally get to see the doctor again?
I'm sorry to hear you also suffer but I hope things are picking up for you since your diagnosis. It's great to have something like this to be able to talk to people who understand!
Thanks for replying SophieM95 , is great to know you are ok.
I think you may be thinking their response would be an overreaction because you are used to putting up with too much with POTS and may have lost a sense of what is severe.
So, while you are well enough to ring, I think you should, because if when it's bad, it is incapacitating you so that you can't ring them, that is serious.
I thought they were overreacting when I called them, and was deeply embarrassed. Until someone explained to me that this was not the POTS, and told me that if I had not rung them I could have had a stroke.
I am not suggesting you will have one, but indicating to you that dealing with POTS symptoms can make you blasé (I was saying "nah don't worry I eat these symptoms for breakfast!")
Or defensive.... the hurt and psychological damage that most POTSies have, caused by having been treated like a hypochondriac for so many years, can make you worried about reaching out for help.
Not asking for help when you have such symptoms could put you at risk.
So anyway, I've said my piece. Giving in and asking for help has just saved my life and got me diagnosed with the Atrial Fibrillation I didn't know I had. Even if I had been fine after ignoring that bout of AF, each bout that's just left long makes the next bouts potentially longer.
Haha yes that's very true Boombiddy it does make it difficult to know if something strange is going on because its always strange with POTS! And the hypochondriac part is also true unfortunately, although I have been lucky recently that they suddenly took it more seriously and hence I'm here now!
Oh goodness glad you found out though, I'm guessing something must have made it feel different enough to make you ring?
That's a good idea although I have only been told by the doctor so far and I don't have a letter yet but might be worth printing some pots info just to have on me (although I hope it won't be needed!).
That's brilliant that they rang up to ask, I'm not sure that happens enough, hope all is going ok now.
Thank you again for your replies, they're very appreciated.
Ps if you do ring em, and have your POTS diagnosis/neurologist's clinic letter to hand, tuck that into your bag to show em or bring with you if you do need hospital.
The A&E and ward doctors were very grateful for me bringing a copy of mine to show them and I got instant respect!
And it helped them to treat me. They even rang the Autonomic Unit where I got my POTS diagnosis, to ask their advice on meds.
Was thinking about this overnight and realised one simple solution is, ring STARS, (Syncope Trust, who deal with POTS and other dysautonomias) on 01789 867503/867516. Jenny at STARS is very knowledgeable.
(Obviously they are only open during the day, but it would help you manage 24/7).
Your GP is very unlikely to know enough about POTS to say your extreme symptoms are POTS. Hopefully Jenny could shed some light.
Sorry I don't mean to badger, it's just that your post concerned me.
And I suppose your docs have told you to stay hydrated etc?
The POTS UK, and STARS sites, should give advice on countermeasures for POTS, which could help you manage.
Oh that's an idea thank you. I still feel a bit hesitant to ring 111 unless I have another bad episode but would feel better for talking to someone properly so I will give STARS a ring.
No you're not at all, I appreciate that you're taking an interest and being so caring. I will try and write some details so I don't miss anything and give them a ring!
Yes I've upped my salt intake as instructed and already drink crazy amounts of water (I think partly because of my low blood pressure). I have also tried the countermeasures but unfortunately doesn't seem to make any difference most of the time. Bit of a pain really! But thanks again for the suggestions, fingers crossed will find something soon.
Sorry to but I’m on this post, this sounds so like! I’m still on v long wait list for Tilt Table, getting worse by the day. Also waiting for Holter Monitor. Can I just ask where you guys got your autonomic testing done? Really considering going elsewhere as wait here is far too long and getting so desperate! Also boombiddy if you don’t mind me asking how your Afib was diagnosed? There’s so much going on so just want to make sure not any tests I should be getting etc? Hope that makes sense? I have EDS also.
Hope you’re both feeling okay today, thanks in advance!
Hi OutOfStripes , I am so sorry I did not see your post til just now and I imagine this is too late to be much use, but I will answer anyway in case you see this.
I got my POTS diagnosis at the Autonomic Unit, National Hospital for Neurology and Neurosurgery, Queen Square, London.
NHNN Autonomic Unit is the gold standard, they are the experts, and nobody else does the full battery of tests that they do. They offer phone support for a couple of years after diagnosis, you can ring with your questions about how to manage etc.
(Queen Square did me an accommodations letter as well, “to whom it may concern” to say I could not stay standing for long, and need help to avoid standing, or getting too warm, or dehydrated. (It really helps when people glare at me for having my feet up on the train seat!))
The Atrial Fibrillation had nothing to do with PoTS but because it felt like PoTS I kept putting up with it.
If your tachycardia is relieved by lying down, in your situation it is likely to be POTS and not AF.
So the next bit is not relevant to POTS, only to AF:
How I got AF diagnosis:
I had been having an extremely irregular extremely fast heartbeat for several hours, and I was feeling ill and breathless, when I rang 111.
They sent a paramedic and ambulance. Paramedic did an ECG and decided I needed hospital, so I was in my local hospital for nearly a week while they stabilised my heartbeat and prescribed beta blockers. The major concern at AF diagnosis is to make sure you are protected from having a stroke. The way to prevent stroke in AF is to give anticoagulants.
The AF Association bit of Healthunlocked is brilliant, so much advice and support and they advised getting an electrophysiologist (heart rhythm specialist). Jenny at STARS advised me to get one who also is specialist in POTS. So now I have a neurocardiologist! Dr. Nick Gall at Kings College Hospital. Dr. Boon Lim is also highly recommended but I found Kings College Hospital isn’t so difficult to get to as Imperial.
How are you now? Have you seen anybody yet about your POTS? Please let us know.
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