I wonder if anybody in the AF community has experience of POTS as well as AF? (Postural Orthostatic Tachycardia Syndrome)? And Ehlers Danlos Hypermobility Type? Because they are so rare, yet affect everything, I am finding it difficult to know how to manage re AF.
General health background:
I am told (by the Autonomic Unit who diagnosed the POTS) that my chronic low blood pressure is due to my stretchy hypermobile veins. Taking fludrocortisone 100 mcg daily for the POTS.
So, I have AF despite low BP, and when I was admitted as an emergency, B p was low and variable, 70-odd over 40-odd, 80-odd over 50-odd, & so on. (Pulse 190-odd and over, when I ran 111, reduced to 160-odd when I got to hospital - why?)
I suspect my particular EDS (though not the pure cardiovascular type) may cause weaker cardiovascular tissues, because two people in my family have had aneurysms, one fatal. My surviving siblings have high blood pressure and varying heart damage. So I want to protect myself from anything that would cause damage.
The good news is, my 2D echocardiogram showed no significant valve damage.
I have no risk factors for a f and am under 60. I have low (varying to very low) blood pressure. So there is no significant reason for this a f.
I am now on bisoprolol to keep pulse rate down.
I have so many question!
Echo showed Ejection fraction 60. Is that significant? Already on bisoprolol when echo taken. I read EF range is 50 to 75 so although this is within range, isn't that a bit low?
Re, distinguishing AF symptoms from POTS, I am guessing (from recent experience) that it's POTS if putting your feet up slows the heart rate while you feet are up, and in AF if it doesn't.
I really would like to know:
1). whether putting up with POTS high pulse rates every day would eventually damage my heart.
(Hospital doctor said it would, but he wasn't a cardio, EP or PoTS specialist... Anyone else been told this?)
2). Is tachycardia a trigger for AF?
3). Will keeping pulse down also protect from stroke by preventing a f from happening?
4). Widened pulse pressures: why?
My blood pressures are somewhat improved, (increased), but only the systolic. When in hospital and being monitored, I noted that the bottom line (diastolic) was frequently 70-something less than the top line. That's a pulse pressure of 70-something. Does anyone know why this might be?
(I have read it is a predictor of poor heart health to come. The doctors did not even notice it).
5). Will long term sleeplessness, &/or 'pushing yourself' when fatigued have a long term detrimental effect or even cause AF?
I really would welcome any light on any of this. I have a handle on EDS and PoTS or so I think, but now this comes along and it doesn't make any sense!
Update, forgot to say, if I get worse, ablation is out of the question because of weaker tissues due to Ehlers Danlos syndrome, so there is not that to fall back on.
Thankyou for reading this long and complicated post, I really appreciate it.
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Boombiddy
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Hi Boombiddy, I have hypermobility syndrome. I have had physio sessions to help with my joints as they are starting to click very often and feel far more loose and flexible so you may want to consider doing some strengthening exercises to help with this if you aren't already? I thought I had AF so I joined the forum but I'm still undergoing tests. British Heart Foundation think I may have POTS. I get dizzy, nausea, breathlessness, high heart rate above maximum during exercise and other symptoms like fatigue and so on. I do hope someone is able to help you with your questions. I have second degree heart block and right axis deviation on my test results so far but still no official conclusions. There is a support website for POTS potsuk.org/ maybe visit there. Are you on medication to assist with your POTS diagnosis?
Hi, thanks for answering. Yes, the fludrocortisone is for the PoTS.
I oversimplified a lot, as it would have been much longer otherwise.
Yes, I have had Physio exercise and Pilates and so on, but fatigue is too severe at this time.
We all have different levels of PoTS. In the tests at the Autonomic Unit, it was found that exercise further lowers my blood pressure, so I have been advised to wait to do any other exercise until I can do the 'rehabilitation' course (course to help you manage the symptoms of EDS, including your PoTS if you have it) at Stanmore.
My questions though are about AF as you can see from the post, so I don't want to bore any AF sufferers any more than I have to with this POTS and EDS stuff.
I know it must be very frustrating for you when your symptoms are fluctuating and fleeting, I had these symptoms many times for many years before a doctor has been able to witness it. It sounds as if your heart probs are more complicated than mine. I do hope they will get to the bottom of it.
I assume you are making use of the EDS and POTS/Dysautonomia discussions on this site as well as the heart related ones?
just a by the way, foot orthotics can help a lot if you have knee/hip pain with hypermobility. I am mildly hypermobile and this has cut down on the turned ankles/knee pains significantly. You CAN get them through NHS but it's slow and they're generally HUGE (so really can only wear with large trainers/hiking boots, not much use to the working woman, eh?). I got mine in the UK through a sports orthotic service, had to pay but it was 150 quid well worth it (this was a while ago). Won't help anyone's heart but nice not to click, I know just what you mean! In US, sometimes they are covered by health insurance if you have an Rx (as I do).
I wasn't very clear when I wrote my first post, so I've extracted my main questions from it and put the here for clarity:
I really would like to know:
1). whether putting up with POTS (or AF) high pulse rates every day would eventually damage my heart.
2). Is tachycardia a trigger for AF?
3). Will keeping pulse down also protect from stroke by preventing a f from happening?
4). My blood pressures are somewhat improved, (increased), but only the systolic. When in hospital and being monitored, I noted that the bottom line (diastolic) was frequently 70-something less than the top line. That's a pulse pressure of seventy-something. Does anyone know why this might be?
(I have read it is a predictor of poor heart health to come. The doctors did not even notice it).
Hi Boombiddy and welcome. I only just caught your post and I was interested as although I have had chronic low BP all my life, it has always been dismissed by docs.
I really don't think people on this site are able (or qualified) to answer 1) - you need to ask your EP and you probably need to see one who is also familiar with autonomic disorders - if you can find one - I did see a cardiologist familiar with POTS on the web-site.
2) Yes, tachycardia can trigger AF - which is why rate drugs are nearly always the first drug treatment prescribed. Just because it can, remember that it doesn't always trigger AF - I found. I often had tachycardia episodes without AF.
3) No - you need to take an anti-coagulant and I hope you have been prescribed one if you have AF.
4). The systolic - the high number - is normally about 30-40 above the dystolic pressure so my old norm used to be 85/55. When in AF it would drop to 70/30 and sometimes go unreadable, which is when the medics panic!
I spent 3 days in acute cardiac unit because of PoTS + AF - altogether I was 5 days in supine position because every time I lifted my neck, pulse went 180+ and AF. As soon as I lay supine and still I was ok. Bizarre. I only had one attack like that and I did not take rate control because I couldn't cope with the side effects except 1 - it improved my BP which is a paradoxical effect as Beta blockers are used as treatment for hypertension!
Exercise whilst in AF is ok as long as you are not symptomatic - rule of thumb you should be able to talk whilst exercising. Pushing through can in some people trigger AF whilst in others it will stop AF it depends upon Vagal tone. If you get very breathless, have chest pain or feel clammy, stop immediately and rest.
Put Vagal AF in search posts - a lot there, exercise the same.
Research is showing a very strong link between arrhythmia, autonomic disorders & autoimmune diseases - they are all connected. There is a Facebook page for research & discussion - Link won't post - search Autonomic + autoimmune in the search and you should find it.
I have PoTS (undiagnosed), had AF but treated with ablation which I now discover is not recommended for autonomic disorders - but glad I had it anyway because no more AF and Myasthenia gravis - which means antiarrythmic drugs and beta blockers etc are antagonist for Mg so I would not take them if it ever returned.
You are the only other poster I have seen with AF and PoTS on this forum, there maybe others out there who can also contribute.
I was also sent for sleep study by my EP diagnosed with sleep apnea, prescribed CPAP and since using sleep is now 6-7 hours of undisturbed sleep, my BP is now steady at 120/80 and sometimes climbing, which I hope will not be a worry. I am currently taking HBOT oxygen treatment which I am finding helps everything, considerably.
Hope you find this of help. Keep posting and asking questions, take care CD.
And for addressing my questions, many many thanks!!
I am sorry for the long reply but I hope it addresses the questions and any answers I hope you may be willing or able to clarify, plus I hope you will find some useful info for yourself here re the POTS, and also maybe some pooled data/shared experience might shed light on the interaction or otherwise of POTS and AF, for us and/or others.
Re 1). Do you know, I have really just been told to just get on with it, by my usually very helpful GP. She thinks I don't need a cardio. (But STARS UK (see below) advise an EP who knows about POTS).
And, some information you might find useful:
when I phoned AF Association, because they felt unable to answer my questions, they contacted STARS (Syncope Trust, Reflex Anoxic Seizures - who also deal more & more with PoTS). Jenny at STARS rang me and was very helpful.
She told me there are only a few doctors who truly understand POTS, and suggested I see an EP who actually properly knows about POTS and treats patients who have both.
(For any fellow newbies I should say this is an Electrophysiologist, a cardio who deals with the electrics of the heart, more appropriate for AF problems apparently, whereas most deal with the plumbing). .
I have a feeling though that my GP will be unwilling to refer me, as because of my rare conditions she has had send me to the top person a few times, which is expensive.
I am told that it is possible for a GP to contact a consultant and ask advice, so I hope to get a list of questions and concerns and ask her to do this.
2). Very useful to know, thanks.
FYI in case it chimes with you and your symptoms:
Most of my tachycardia over the years has been POTS, and I had just got used to being tachycardia daily, sometimes with odd rhythms and no rhythm.
For some reason the AF felt subtly different, and although the POTS can feel a lot more frightening than the AF, the AF was alarming in a slightly different way.
I actually felt guilty ringing 111 (even though they immediately sent an ambulance), because normally I eat symptoms like those for breakfast!
(Tachycardia is my daily normal every time I stand, sit upright without my feet up, or walk to the kitchen...)
Just in case this is relevant to you or any reader:
With my POTS (I say 'my' because we are all different, but there are some crossovers in symptoms), there can be a devastated feeling of shock. And you can feel you are in an earthquake, suddenly feeling as if you've been dropped 6 feet into the ground or shunted sideways several feet through the air. So you can fall over with the sheer disorientation. This may not be the way your POTS feels, we are all different, but if you do have POTS and do get these feelings, don't worry you are not losing it, it is more likely they are POTS symptoms.
Since I have been diagnosed and have countermeasures and fludrocortisone the symptoms are better managed, but I suspect that by accepting a heavy symptom load and not seeking further help with management, I have got blasé about symptoms. I have I think put up with AF before, because of this, so now I feel very fortunate that the arrhythmia has been observed and recorded for the first time, despite its many occurrences over many years. (The thing is, I am still to decide, what to do about this now...)
In case you need to know this:
The only people to give the whole battery of tests for POTS and related, are the Autonomic Unit at the National Hospital for Neurology & Neurosurgery at Queen Square in London.
(Once you have been diagnosed by the Autonomic Unit, the added benefit is that even after discharge you are still on their books so that any doctor treating you can contact them for advice re your treatment).
The EPs who deal with AF and POTS are Dr. Tushar Salukhi at the Royal Brompton, and Nicholas Gore at Kings College.
3). No anticoagulant prescribed. Firstly, with my low score for AF risk factors it's in accordance with the NICE guidelines, secondly because with EDS fragile tissues there is more chance of bleeds. I get spontaneous bruising anyway, don't want bleeds.
But if keeping the pulse rate down will not necessarily prevent AF, AND AF can be asymptomatic, then I could develop clots and not even know about it til I have a stroke or embolism?? Aaaaargh!!!!
But my GP seems fine with it, and the NICE guidelines say...
Aargh!!!
4). Yes, the normal pulse pressure range being c30-40 is why I was asking the question. And Aaaargh your 30 diastolic!!! Mine has been 40 or above afaik, but 30??? Yikes!
So I am sending you some sympathy to put in your pocket in case you need it. That can not feel nice, 30!
Actually, that reminds me of something very odd... When my Mum had a minor stroke c 20 years ago, her BP was 30 (I'm assuming the diastolic!) and, she told me, the staff were walking her around to keep her blood moving, as they didn't know what else to do! Hmmm...
Re rate control, interesting you should say that. My BP seemed to improve ie. go up, when I was treated (initially digoxin and bisoprolol). But only the systolic. Odd!
The bisoprolol now I've been discharged is the lowest dose 1.25 something, because my resting rate is low and it would not be good to make it lower.
But, my BP fluctuates a lot minute to minute anyway, and the BP taken in hospital was always on bed with feet up, and at GP checkup, sitting.
Just generally, AF or no AF, I just want to shout at doctors sometimes "it's POSTURAL, ORTHOSTATIC tachycardia dumkopf! The clue is in the name!!! Idiot!" But it wouldn't help...
In case it's useful to know: POTS sufferers, because of the autonomic nervous system dysfunction, tend to be sensitive to meds, react differently to them, and tend to be better on lower doses.
Another question I hope someone can answer:
Is it common to feel less able for mental effort?
I feel spacey anyway with POTS, and can't be sure if it's the usual POTS or getting over the whole AF experience, or the beta blocker, or a combination, but I feel much less able for mental effort, and my head feels 'wrong', a bit vacant, at times.
THANKYOU for advice to look up vagal AF, will do!
Maybe nothing to do with that but I I do have a tendency to vasovagal syncope, too.
Re your comment on association with autoimmune disorders, hmmm, we have a lot in my family. I'm the only one without one, so far. But, I may have to be referred re mast cell activation problems, also more likely if you have EDS and POTS. When I had the AF (2 weeks ago), I had recently had a few periods (each of 2-3 weeks' duration), where I had symptoms of mast cell activation without any obvious allergy to trigger them. Although mast cell activation syndromes are not autoimmune, they are obviously an exaggerated immune response, so, I did wonder whether it's relevant. I may ask re this at UK Masto, another helpful org.
Well, it looks like to have EDS and POTS and the myriad associated problems, you need a PhD just to understand and manage it all! And now AF too just to muddy it all further!
If I get any progress re an EP who also deals with POTS, I will be overjoyed, and hope to post any useful info and tips I get from that, but it may be a long way off.
I am very grateful for your thoughtful reply, and I hope that you get the diagnostic help you need as I know how POTS is so undermining when you don't have a diagnosis to present to the sceptics. (A good tip: I took my diagnosis letter with me to hospital and they found it very useful).
If you want to ask me any questions too, I am happy to answer, as I have been through the system re POTS, EDS III, and so on. If you feel they shouldn't be in the AF section, you can leave a message for me here to go the the POTS/dysautonomia section.
Dear Boombiddy - only just read your post here, thank you so much!
As said in post reply to your more recent post my BP seems to have stabilized now, which I believe is due to the Pyridostigamine - which I only just learned is also treatment for POTS and the HBOT treatment which seems to have eliminate the Brain Fog - one of the VERY worst symptoms of Mg AND of anyone with chronic Autonomic dysfunction and autoimmune diseases - I think Brain Fog describes it - difficulty in concentrating on anything, losing words, not being able to get mouth around words, losing track of what you were saying, inability to process data - especially what people say, feels hard work to think! Difficulty making decisions?
Re sleep Apnea - my EP asked GP for referral to Pulmonologist - had sleep monitor - diagnosed and offered CPAP within 2 weeks. It has really improved QOL. CD x
Hiya CDreamer, whaddaya know, I got this while answering your reply to my other post!
So glad you have improved QOL with sleep apnoea treatment.
Everything you said re brain fog, word finding, concentrating, I was nodding and grinning. Definitely! And making decisions? I won't even go there. And being unable to process data. I find it very hard to communicate too because I just get lost. And to speak or write briefly (bet you didn't guess that), as I can't process the data coming out, either.
Sorry I don't understand some of your acronyms, HBOT, Mg. Ah I get it does the Mg stand for your myasthenia gravis?
HBOT = Hyperbaric Oxygen Treatment - breathing 100% oxygen under pressure. Promotes healing, used in NHS for healing burns and persistent ulcers mainly but is now more widely used for all sorts of conditions. I have met people with MS, Fibromyalgia, all types of autonomic dysfunctions, brain trauma, autism, cancer, to name but a few. I go to my local MS Centre who host 2 chambers installed by the HBOT trust. I pay £9 per weekly treatment.
Indeed Mg is Myasthenia although it is also symbol for Magnesium, which is bizarre as one thing I must avoid, many AF'ers take Magnesium for AF so can be confusing on this site. Take care. CD x
Hiya yes first thing I thought was magnesium, had to look again.
If you are taking oxygen I would take more of the antioxidant vitamins too.
EDS consultants recommend up to 3000 mg vitamin C a day (I met a doctor with EDS III who takes 4000), because it helps in cross-linking proteins. So you could try it, two birds one stone.
For burns healing on skin, there is research evidence that rosa moscheta oil really can heal severe burns, and I can't remember where but apparently it is used medically for skin burns and even old burns will respond gradually. It contains a lot of antioxidants.
I would urge you to take vitamin C, E, whatever antioxidants, if you are getting oxygen therapy. Oxygen combining with tissues equals not good unless antioxidants are adequate, ie increased in line with it.
Actually the anti-oxidant thing is very complicated and because you are taking oxygen under pressure, it behaves differently and there is much greater uptake in bodily fluids and the cells so there is no concern - but I know the medical fraternity talk a lot about oxygen poisoning, but they often haven't read the literature on HBOT as unlike medical oxygen it doesn't only saturate the hemoglobin but penetrates every cell of the body.
It is off piste as far as the medics are concerned but then my experience is that the medics offer very little other than drugs which can have horrendous toxic affects. My GP signed off the forms for HBOT as long as my EP was OK with it. He knew absolutely nothing about it but knows I monitor myself and asked me to take ECGs in the chamber - unfortunately that is not possible because electrodes in pure oxygen is not exactly a good mix so I take a reading just before entering the chamber and immediately after.
My HR is normally drops about 15 points but more importantly, I haven't experienced nearly as many ectopics, my heart rhythm is more regular and QR interval is better and I haven't had 1 episode of tachycardia since I started. Hasn't improved Mg symptoms particularly but increased energy, no brain fog and no tachycardia is a pretty good result as far as I am concerned.
But 2at is hard on the body and I am thinking of asking to reduce to 1.5at.
I try to take an holistic approach, which has in general worked well for me.
But I do ensure I take Vit C - 1000mg/day plus other supplements.
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but nice not to click, I know just what you mean! In US, sometimes they are covered by health insurance if you have an Rx (as I do). 
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