Newbie here, asking when to call the doctor and what symptoms to just put up with. Plus slight detour for life story (Grab hankie or bucket)

Newbie here, asking when to call the doctor and what symptoms to just put up with. Plus detour for life story (Grab hankie or bucket)

Hiya all, I am still a newbie really and can't even begin to formulate all my questions as my situation is complicated by some other (rare and complicated) conditions.

If you don't want to read long complicated posts I don't blame you, and advise you to give this one a miss, and I will try to write a shorter clearer one. But if anyone is willing to read to the bottom of this I would be grateful, as I am just too confused to be brief and have spent hours on this already...

So, for the brave, here goes:

I am finding life so confusing with A Fib.

The two main reasons:

1). I have another condition alongside which gives similar symptoms, so it is hard to tell which condition caused what at some points.

2). I put up with the symptoms for over 40 years before getting diagnosed, so I hardly register that it is happening, and need to know when to call the medics and when to just carry on as normal.

At age 18, despite having been dragged to hospital with heart all over the place stopping and starting (we could just say 'irregularly irregular' but I am sure you know the terror of that first AF episode), and pulse 270 when they stabilised it, I was treated as a hypochondriac so I just had to live with the terror of frequent bouts of terrifying arrhythmia. I was frightened of fear itself, and completely messed up.

What I didn't know at 18 is that so many of my symptoms were POTS (Postural Orthostatic Tachycardia Syndrome), and many of these are very scary indeed, including (at that time) feeling your breathing reflex isn't working and having to concentrate on staying breathing... Yes weird and guaranteed to make you think you are going mad. (POTS is a kind of autonomic nervous system dysfunction. Autonomic nervous system covers the 'automatic' things like breathing, heart rate, blood pressure, sweating, temperature regulation, digestion...and my lifelong POTS was diagnosed finally in 2012 on testing at NHNN neurological hospital.)

So this is where reason number 2 comes in: the cavalry was not coming. After the first year of terror I had to get hardened to the tachycardia and periods of arrhythmias, and tell myself 'well you've never died from it, it's just panic'.

And my point is, I am now so used to bouts of arrhythmia that I hardly notice it, having just 'put up with' stoppy starty heart, plus fainting, blackouts, near-faints, shock, weird disorientation caused by swooping, plummeting blood pressure and many other things that (as my specialist confirms) are normal for POTS.

Stoppy starty heart? I eat those symptoms for breakfast!

(Sinus tachycardia has always been my daily normal, due to POTS. So walking from sofa to kitchen, feeling "hmmm that feels a bit fast" and finding my heart rate at 176 bothered me not at all. (Resting heart rate was usually 60 but standing or being upright makes it rise dramatically hence the name postural Orthostatic...)

And this is on fludrocortisone to raise the BP thus bringing down the tachycardia. It could have been a lot higher without it).)

Fast forward to July 2016:

Normally I just put up with bouts of persistent arrhythmic heart and tachycardia, but it dawned on me that if this bout I was experiencing was POTS, it would have been relieved by getting my feet up. (Note to self: D'uuh Boombiddy, the clue is in the name, Postural and Orthostatic!)

Well I had been on the couch with my feet up for over 3 hours now, heart rate (when I could count the beats, leaving out a lot of the 'extra' ones) was 196, 20 higher than I'd experienced ’normally' and I was out of breath and dizzy, no more dizzy than I usually would be with POTS, but dizzy lying down is not POTS, not my kind of PoTS anyway.

I actually felt apologetic ringing 111 for a little advice, thinking they might tell me off for wasting their time. They only sent a ruddy ambulance! I was diagnosed with AF, and kept in hospital for a week while they got me stable, and they ascertained that it was Paroxysmal AF.

It was such a relief after all these years for an ECG to register what was going on, and for the medics to hear those beeps going all haywire. Finally!

Anyway, still trying to get back to my point... I blame the bisoprolol...

Before I was discharged from hospital I asked the ward doctor when should I call medics? He said "when your heart rate goes to 120". I laughed and said "then I would live here, as it goes to 120 and well above, many times every day!". Then I remembered I'm now on bisoprolol which should bring it down.

(Actually now I have a low resting heart rate usually in the 50‘s, has been 45, but also still get 120 as above when standing a few mins or 140-odd if I use stairs, so I've now got bradycardia as well as tachycardia).

The hospital doctor prescribed the beta blocker because he reckoned that the tachycardia I experienced every day (from POTS) could damage the heart eventually. Otherwise I suppose he would have prescribed a pill-in-the-pocket approach.

He also seemed to assume that the tachycardia was a trigger for AF. But since being on bisoprolol I have had some periods of arrhythmia at heart rates in the 40‘s.

I asked one of my GP's when should I call the doctor. He said when your heart is at 180. (He is the surgery's mandatory useless GP though.)

I asked my own GP how long I should be in AF before I call the medics.

She said 10 mins then call 999. I thought "whaaat?” I said look I felt guilty ringing 111 for this...

She said ok, if it's just the arrhythmia and no other symptoms like crushing central chest pain, ring 111 after 10 mins, get yourself on an Urgent schedule so they ring you back in 30, and if you're still in AF they'll send a paramedic to check you out.

Otherwise (and she listed a constellation of symptoms), ring 999.

Now, on this site I see people saying things like "I've been in AF for 18 hours"...

And, quite frankly, since I've survived so far I find it very hard to take my symptoms seriously or think anyone else would.

So if my GP says 10 minutes and someone is saying 18 hours, what do I do?

Is it because those people saying "I've been in AF for hours" are safe from stroke because they're on anticoagulants?

(I'm not on anticoagulants cos low CHAD-thing score, (1 point for being female), under 60, no structural heart problems or risk factors. But I do wake up choking due to obstructive sleep apnoea and this doesn't appear to be counted in the score).

To those of you in persistent AF, I am guessing your the answer would be "No, never call the doc", or you'd never be out of hospital. So why should I call the doc when in AF? I really don't understand.

Well thankyou for reading this! It has taken me ages even to get to my question because I am so confused, and I really appreciate you sticking with me.

What do you think, what is reasonable?

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  • Hope you get sorted soon. Ps I read to the end

  • I read to the end too - wow, your whole life you have been through the mill. I had to look up POTS as I had never heard of it, and it is often misdiagnosed as panic attacks - you must have thought you were going mad.

    I can't advise on whose advice you should take regarding the ambulance issue - there are many on here who regularly experience what you are going through and I don't. However, are you been treating properly for your sleep apnea? This in itself can cause AFib - you should be tested properly and wearing a device at night. A friend of mine says his life was immeasurably changed once he had the mask.

    Wishing you all the best in sorting out your confusion and the best of luck in dealing with all your health problems. Irene.

  • Hello Boombiddy. I also read right to the end. No wonder you are confused! I notice that you write about a ward doctor, a hospital doctor, your own GP, but no mention of a specialist. I suggest that you see an electrophysiologist (or EP) to get proper advice from someone who knows exactly what is going on.

    (I've been told to wait 24 to 48 hours before going to hospital - but I'm medicated up to my eyeballs.)

  • Hi Boombiddy - First let me tell you that I certainly didn't find your post complicated in the slightest! In fact it was extremely interesting to read.

    I'm sorry to hear that you had to suffer the terrors of misdiagnosed AF and think that you were a hypochondriac!

    Here are my thoughts after having had AF and tachycardia diagnosed 11 years ago and 3 ablations since:

    On the subject of when you should call for help while having an attack, what I'm sure we all realise is that AF affects people in so many different ways. Even if their high heart rate is the same one person may feel ok, while another may feel extremely ill or pass out. I think this could be because although the heart rate is the same, the beat it's doing is not. This should also be taken into account when calling for help, i.e. it may be an idea to call for help if an attack is making you feel extremely unwell and you are still experiencing feeling ill when sitting still. Of course with any chest pain, the wisest thing to do is dial 999.

    Also in your situation I would certainly want to be on anticoagulants. I am female and started taking these when I was in my 50's.

    It will be interesting to hear others responses to your post.

    Best wishes

    Jean

  • Have you thought of going to see an EP?

  • You have coped with far more over the years than many of us and I understand your problem in knowing when to call for help. My rule of thumb I think would be, does this feel different, chest pain, is it lasting longer than last time? I have been given conflicting advice as to when to go to A and E. As this is a new diagnosis I would err on the side of caution. As you get more familiar with this additional diagnosis then you may cope at home more. A double whammy,poor you. Lots of support on here

  • I found your post very interesting.

    I go along with what JeanJeannie has said, particularly with regard to anticoagulant.

    Also sleep apnea is known to be a trigger for AF so will need looking at.

    As others have said you really do need to see an EP i.e. a cardiac electrophysiologist ......a cardiologist who specialises in diagnosis and treatment of arrhythmias . You should ask to be referred to one and will find a list of these on the AFA website

    Regards

    Sandra

  • Hi Boombiddy, if you’re free on Sunday October 9th and can get to Birmingham, you could do worse than register for the Heart Rhythm Congress patients day. I imagine either the AF Association or Stars groups would be helpful for you. The AF one does tend to get oversubscribed so there may well be a waiting list already. You will be able to talk to other patients and also quiz the expert speakers. Quite a number from this group will be there. Here is a link to the page with the agenda on. Cost is £50 for the day including a packed lunch. heartrhythmcongress.com/sci...

  • Thankyou for this Cyril, this is really helpful.

    I have serious problems travelling though. Can only travel with my feet up, which means train, ambulance, or if car/taxi, less than c 20 minutes.

    I am still considering it though, as the rail companies' Disabled Passengers helpers (London Midland's and Virgin's are anyway) are heroes in my book, and I could try to get there with help.

    I really would like to know, if you book with the heart Rhythm Congress, can you do a pick'n'mix? (I would like to do a bit of AFA and a bit of STARS).

  • Ask about the pick and mix!!! Might well be if there is space in both.

  • Hi There Boombiddy and welcome to this mad site. Well the site isn't but most of us here are LOL

    I did read right to the end. twice , as you are actually my second person with POTS. The other was a very early member of AF Association in her late twenties when diagnosed who also had AF so you see I did know a little about it.

    Others have said it but you MUST MUST MUST get to see an electrophysiologist (EP) who is the electrician of the cardiology trade to the normal bloke's plumber. OK everybody says "but then he will want to do an ablation " . Well maybe not but he/she does actually understand the electrics of the heart and can offer advise and support rather than the sticky plaster approach you have so far suffered. .

    Going to hospital? Why? AF won't kill you even if it feels like it sometimes and as one old friend commented recently if he had called an ambulance for every AF event he would have one stationed outside his house 24/7 and never get any work done as he would always be in hospital. It is really up to each individual but the general advice given is that if you have any chest pain, or fainting (difficult call for you since you do anyway) then a trip to A and E may be in order and maybe if you heart rate is exceptionally high (around or over 200) but other wise not a lot of point. As above mentioned commented, AF is a chronic condition not an acute one and A and E is for emergencies.

    Do read all you can from AF Association website and demand to see an EP as soon as possible. You can find one near you from the AF A website under patient information .

    Bob

  • @bob If I hadn't gone to A &E ten days ago my prognosis from heart failure would have been very gloomy. I was fed the baloney about AF not killing you until I believed it. Not so according to my consultant. Damage has been done to my heart muscle because I waited. Meanwhile my poor heart was trying to get rid of fluids and in doing so, causing further damage.

    When in doubt seek help. I'm very glad that I made the decision to jump in the car that morning.

  • The words 'AF won't kill you' should be followed by 'suddenly' because long-term neglected or poorly managed AF does!

  • Absolutely - that's the problem that many medics and the public miss.

    However as an ex electrical engineer I am not convinced the statement holds true in all cases. In everyday life electricity doesn't kill you directly but it cause a shock which causes the heart to stop.

  • My view is that you should have been properly treated and not rely on an emergency service. It obviously was not a sudden situation for you and your condition should have been monitored to prevent this.

  • See this post to see how the @nnnn works!!!

    healthunlocked.com/afassoci...

  • Hiya BobD, thanks for this. Re "everybody says "but then he will want to do an ablation " .", yes that is a problem because with the EDS I doubt I could have an ablation. Dodgy tissues. Advice is to avoid all surgery if at all possible. This is why management and not letting the AF progress is so important.

    I did read that letting an AF episode go on longer than necessary before it is treated can lead to longer episodes. I want to avoid giving the NHS unnecessary grief, but also avoid progressing to longer bouts.

    That is why I am so grateful for everybody's responses.

    I really want to get a neuro EP who is an autonomic specialist, and get his/her advice to hold back progression too. STARS have recommended someone, I just need to convince my GP.

    @P0rtnahapp1e and @Buffafly I am so sorry you experienced this. And thankful for your warning.

    Thankyou all again for your replies, it is so informative and helpful and supportive.

  • See this post to see how the @nnnn works!!!

    healthunlocked.com/afassoci...

  • I too read to the end, and I know how difficult it is to have different problems and not knowing which problem is causing problems, if you see what I mean. I have AF, a leaky aortic valve and severe respiratory problems caused by v poor lung function due to scoliosis. I have 3 consultants at Brompton, cardiologist for valve EP for AF and respiratory consultant for breathing. At the moment my breathing is awful, is it AF, valve or maybe pollen, pollution, humidity affecting lungs.

    Do you have an EP? I think you really need to get specialist help, and also surprised you are not on anticoagulants. If you do not have specialist care I suggest you ask for referral.

    As for calling Dr or ambulance, if you are really concerned then definitely call. Paramedics are highly trained nowadays, and if they feel a need they will take you into A and E. I have found that A and E will never think you are wasting their time.

    I really sympathise and hope you can get some help soon. Jean

  • Hiya MisUse, thankyou for your reply!

    I am really sorry to hear you are having so many problems with breathing, that must be really rough!

    I don't mean to tread on your toes, as you know your condition a whole lot better than I or anybody else do, but your reply got me thinking...

    Re.: "At the moment my breathing is awful, is it AF, valve or maybe pollen, pollution, humidity affecting lungs", have you read Kodaska's reply here? Do you think it might help to see if an over-the-counter antihistamine could help? If it doesn't, that could rule out allergic reactions as a cause (since you mentioned pollen etc.). If it does help, you could either treat it as one allergy dealt with or look at mast cell activation syndromes.

    With connective tissue disorders like Ehlers Danlos you can get mitral valve problems and scoliosis, (and non-typical asthmas too, although I guess you haven't got asthma as you would have mentioned it?) and I wondered if looking at the Hypermobility Syndromes Association website could furnish you with some clues/answers. However, I realise you can have all these things and not have a connective tissue disorder.

    Please forgive me if I have intruded, (because I know how sick one can get of people thinking one's condition can be healed with potato skins at moonlight and 'posidividdy’), but just in case any of the things here are helpfulto you...

    Very best wishes from Boombiddy.

  • Hi Boomdiddy, thanks for offering advise, we are all here to support each other.I am already on prescribed antihistamines, and it was changed recently, but with no improvement. I have been told I have asthma which has been found during testing, but never had attacks as such. I am under the Brompton specialist heart/lung hospital in London, and they have looked after me really well for last 20 years. I am going to get my next appt bought forward and see the Dr who has specialised with people like me i.e. respiratory problems mainly caused by scoliosis. I feel certain if there was another underlying lung condition, it would certainly have been found before now.

    Will let you know how I get on.

    Hope you get the help you need. Best wishes. Jean

  • Yes I am sorry for walking in gung-ho on your managed condition about which I know very little, and I appreciate your being gracious about it.

    Really glad you are getting the best care for you.

    Best wishes from Boombiddy.

  • You didn't no apology necessary

  • First of all, my sympathy, but then I have to say very interesting as I have a daughter with some similar symptoms to what you describe who was first diagnosed with epilepsy, later changed to mystery!

    I haven't read other answers yet but my instructions are to call for help if breathless, dizzy, blacking out, chest pain and generally feeling bad.

  • Buffafly, how old is your daughter?

    The epilepsy comment rang a bell because at 17 I was told by my teacher to go to a neurologist because apparently I was always fainting (I didn't remember once fainting at that time but they were always catching me before I hit the deck apparently). All the neuro did was to tell me I didn't have epilepsy.

    I just wanted to say, if she is a teen, don't despair, it can be just due to their stage of growth, and gradually get better.

    ( The permanent POTS I describe is a consequence of Ehlers Danlos Syndrome, a connective tissue disorder I was born with.)

    You could do worse than ring STARS (Syncope Trust) who are very knowledgeable about POTS and related conditions and could point you in the right direction, help you find an appropriate specialist, and give you both some support and understanding.

    I do hope she gets sorted.

    And thankyou so much for your reply to my post!

  • Thank you very much for your kind advice - I wish we had had it when my daughter was a teenager but she is 46 now and as you suggested she improved with age but the diagnosis of epilepsy in the days when the attitudes to disability were far different to now was a life changer 😞

    I hope our replies have been helpful. The two main worries with AF are stroke (blood pooling in your stuttering heart clots and the clots move) and heart failure (your heart muscle is damaged by being pushed too hard for you). The point of going to A&E is for a qualified person to judge if some kind of intervention is necessary to prevent one of the above.

    My cautionary tale is that I was 'toughing out' an episode of AF when my cross GP ordered me to go to A&E, tests showed heart damage and now my ECGs look as if I have had a heart attack. My HR was officially 130 so that is not the test!

    I don't want a hankie or a bucket, I want a vuvuzella because you come across as a very brave person!

  • Buffafly thankyou for your very clear advice, I will remember it.

    I am so sorry your daughter went through what she did and hope this info might even be of use for her to make sense of her life. Things not making sense, and a feeling of "just anything could happen, any time" is so traumatic.

    I found the POTS explanation released me from so much fear, self-doubt and the darkness of those times.

    There are probably quite a few people like us, because really doctors have only become aware of these types of autonomic nervous system problems in the last 20 years or less.

    Again, many thanks, from Boombiddy.

  • I'm glad I'm not the only one confused by AF and being told conflicting information. I saw my GP yesterday, he's new to the practice, and I told him the fear and confusion I got while in hospital, especially the bit about not going to A&E again and seeing my GP instead, he almost went up the wall. Lynn.

  • Just spent 10 days in Corpnary Care having presented to A & E in the early hours with difficulty breathing and very fast rate (170).

    I too had asked when/if I should seek help and was told that no one ever died of AF and that I should live with it.

    I've just been informed by the consultant that, although they have tried to stabilise all aspects of my condition with drugs of various doses and applications, these will take some time to get right and I well may be in A &E four or five times again in the near future.

    Another warning. I started attending a cardiologist privately when my AF was diagnosed, but my local hospital were unable to access his test results on the system so unable to do comparisons with curren echoes, so going privately, in this case, was a waste.

    I held off getting help through the nights where I had rapid heart rate, SOB, fluid retention, and where my damaged valve and heart muscle were becoming less able to function because my heart was trying to work too hard.

    Don't hesitate! Get help Asaph! You have one life and one mistake in your timing could be fatal. I lay, gasping and crying at nights for over a week while things got worse because I thought I had to put up with it. Good luck!!

  • P0rtnahapp1e I am so very sorry you have been through this!

    Learning where to draw the line is not easy, but I will definitely heed your warning.

    Re your record from your private consult not being accessible at the hospital, that is interesting.

    I opted out of the online records thingi as there was the possibility of our records being for sale and accessible to nosey parkers, insurance companies, etc.

    But obviously it is a great idea to have your records so accessible.

    One thing I did before I was whisked away in the ambulance was grab one copy of my clinic letter from the neurologist, which contained my POTS diagnosis and the POTS management recommendations (and confirmed the EDS diagnosis). And my EDS UK card which gave handling instructions due to my fragile tissues and complex picture.

    The A&E doctors were extremely grateful. The ward doctor used my POTS diagnosis letter to get the neuro unit's details and phone them for treatment advice (re meds.) then kept the letter in my file.

    So I suggest putting a copy of your private cardio's clinic letter in your handbag with meds list etc.

    I now have a Tyvek (indestructible) envelope in my handbag containing these, an ECG the paramedics gave me to show doctors, and an accommodations letter from the neuro unit 'to whom it may concern' (re my need to sit down and put my feet up, stay cool and be given water if needed, to help me not faint).

  • @Boombiddy, thanks for your reply. You have just made me realise that I have never had any written report of any type from my private consultant, only verbal. My GP has had emailed reports from him, but no actual echoes nor scans, simply factual observations.

    I was asked in CCU whether I wished to continue with the NHS consultant or the private, and I of course opted for the former, as I had progressed further with her in ten days in hospital than I had with the latter in four years.

  • Hiya P0rtnahapp1e, you can just ask your GP to print out all the clinic letters from the private consultant. When any consultant has forgotten to copy me in, my GP just prints it out for me at my appointment with her, no sweat.

    If you haven't made it clear that you want to be copied in, make it clear now. I can't remember who & how, you could ask GP /receptionist / consultants' secretaries. A consultant's secretary is a really helpful person to contact, usually. (S)he will probably email or post you copies of test results and clinic letters if you ask.

    Hope this helps and you get all the documentation you need.

    Print a few copies of each and keep filed to grab/consult when needed.

  • See this post to see how the @nnnn works!!!

    healthunlocked.com/afassoci...

  • In some cases the relevant names do not appear so there is no option but to leave it as @nnnn

  • Thanks P0rtnahapp1e!

    So there PeterWh , ner ne ner ne-ner- ner!😅

    And you smell so there ner!

    (ie really relieved it's not just me...)

  • Sometimes the server takes a time to respond in which case I go back.

  • Oh life's too short for that.

  • Thanks P0rtnahapp1e, I like the cut of your jib! Sorry PeterWh , I meant P0rtnahapp1e 😉

  • I read to the end as well. How awful to go through all that with no clear direction or real help. I reiterate, please go and see an EP. If we know the area you are in then one of us may be able to suggest one.

  • W-wow! Thankyou so so much to everyone who has replied! This is so helpful.

    I couldn't sleep thinking I had made a fool of myself with my long-winded post, and came to the site to take my post down before anybody read it.

    I am gobsmacked at your kind and thoughtful responses! And I will read all your posts very thoroughly again and put it all together in my head, so as to get a clear picture of how to proceed.

    In case this is relevant to anybody:

    I also wanted to say, not everybody who has POTS has had it lifelong.

    **That is so that anybody here who has a teenager diagnosed with it doen't despair, as sometimes teens get it because of their stage of growth.**

    Mine is a consequence of Ehlers Danlos syndrome (a disorder of collagen, is genetic, so lifelong).

    STARS (Syncope Trust) suggested I come to this board to ask questions as it is a buzzing community generous with their knowledge and experience. They weren't wrong! They might have added kind and supportive too...

  • It sounds like the typical mast cell activation syndrome/disorder (MCAS/MCAD):

    - mysterious ailments whose true origin is unknown

    - ailments that should be corrected by "standard treatments" but aren't

    - POTS

    Yes, POTS is considered one of the effects of mast cells gone wild, by those few doctors who know about MCAS/D.

    A few other symptoms of this malady:

    - eosinophilic esophagitis

    - Ehlers-Danloss Syndrome Type III (hypermobile joints)

    - gluten intolerance and other food allergies (note that all allergies are mast cell responses to foreign substances)

    - and my particular group of central nervous system symptoms: dizziness, fatigue, paresthesia (peripheral neuropathy), bleary/tired eyes, rash, itching, shortness of breath ... and a few other minor ones.

    I take a mast cell stabilizer called quercetin (1,500-2,000 mg/day) and two antihistamines (loratadine (Claritin) 10 mg 1/day) and ranitidine (Zantac) 150 mg 3/day) and this has reduced the severity and duration of my symptoms. The antihistamines are H1 and H2 receptor blockers, respectively.

    A search on "mast cell activation" will get you all kinds of reading material.

    Best of luck.

  • It is interesting you should say that Kodaska, I am trying to get checked out for MCA's.

    This is because I had some unbearable 2week long bouts of 'insect bites' that were keeping me awake and actually waking me up with pain, something I had had many times since early 20’s but dismissed as neuroticism. This year though it was quite painful and relentless, so I looked up my symptoms, responded to the indication with disbelief (MCA came up time & time again), and in desperation tried Cetirizine cos I'd recently been prescribed it for urticaria and had some left. And it worked! I had never had urticaria before nor such distress with the 'insect bites' sensations, so I think something has got worse this year...

    Because my symptoms had responded to Cetirizine and my GP reads up on things, she has proposed to do baseline t.. oh I can't remember, it starts with t test, then test when symptomatic, then refer me on results to a local dermatologist in the first instance. I am trying to get an asymptomatic 2 weeks (ie without the creepy-crawlies 'bites' sensations) so I can get the baseline, but I get the odd symptomatic day.

    I have so so many symptoms I didn't include as we'd be here forever, and some of them are covered in your reply. I don't know (yet) what eosinophilic is, but I do have swallowing difficulties intermittently, and GERD and gastroparesis, and and and....

    (And naturally enough, chronic pain and paraesthesias too because of soft tissue damage and everyday joints subluxations from Ehlers Danlos).

    Ehlers Danlos syndromes are not however a symptom of MCA, they are a heritable disorder of connective tissue, but a higher proportion of the EDS population have MCA's than the general population.

    I am so glad you have got a diagnosis and treatment.

    Would you do a post on MCA and your experience? I would love to read it, and as AF can be due to MCA's I think it could be really helpful to the AF group.

    Thanks again and I shall watch for your posts!

  • Your having a variety of other symptoms point even more strongly to MCA. Ehlers-Danlos is, as you say, heritable. However, Type III is linked to MCA.

    Did your doc speak of doing a tryptase test? Be careful about that. If you have MCA the result may well be normal. High tryptase is associated with mastocytosis, which is very different from MCA.

    You might be interested in the book, "Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity" by Dr. Lawrence Afrin. It's newly published and available on Amazon.com. The writing style leaves much to be desired, but the content is excellent - lots of case studies and analysis.

    I might have already shared some of my MCA experience here, after I realized my problems didn't have to do with flecainide. I haven't posted much about it in this forum other than to apologize to flecainide for giving it a bad rap.

  • This is really helpful Kodaska, thankyou.

    The tryptase is exactly what my GP wants to test for, alas.

    She wants to start there because she feels she can't yet again send me to the top of the tree, given that in the mast 6 years I have been sent to some pretty eminent specialists for some pretty esoteric stuff.

    The book rings a bell, I shall check it out. And I shall look up your posts. Many thanks for this!

    Ps: after posting this I went away and checked... I forgot, I have the book you suggest! I was reading it on my iPad before the AF event that landed me in hospital, and it had got completely forgotten after the AF and bisoprolol! It does look a daunting read, not sure I'm ready to take it up again... But I am glad I have that option. Very glad it comes recommended too.

  • Good luck. Just don't let anyone tell you that your (near-)normal tryptase reading means you don't have a mast cell problem.

  • Thanks Kodaska, that's really helpful to know.

    I'm not sure whether to even bother getting the serum tryptase tests done now... Any suggestions as to how to proceed?

    My next GP appt will be taken up with trying to get an EP, so maybe I will tackle the possible MCA next after that.

    (So so many systems of the body affected with EDS, POTS etc. that it gets confusing. Right shoulder needs Physio (chronically subluxates), thumbs and fingers too, now AF, & possible MCA...feel I am always a step or three behind).

    ...I am sure that with MCA you know all about having to deal with multi-system stuff...

    The good thing is that because the periods of chronic 'insect bite' sensations I described had responded to Cetirizine my GP accepts that something allergy-connected is going on, as in July she prescribed Cetirizine (as it had worked for to tide me over til we find out what it is).

  • If you really want to fluster the medics, ask for a flow cytometry analysis of your mast cells. But first read about it in Afrin's book. He tells how it's done and why.

    Your GP is brilliant (about some sort of allergy thing). All allergic reactions are due to mast cell activation. Duh. So that doesn't tell us anything.

    Best of luck!

  • Hiya to be fair to my brilliant GP, I was not quoting her but staying non-committal as I do not know enough myself to say.

    My point really was that it is the kind of symptom that could be dismissed as 'all in the mind' but she did not dismiss it. I was glad that I had tried the Cetirizine because this is what showed the symptoms to be mast cell related (and because of the relief it gave, obviously!).

    I think it is reasonable to assume that not all mast cell activations are due to a Mast Cell Activation syndrome or disorder.

    I will definitely look up the flow cytometry analysis, thanks!

  • Such an interesting story, especially regarding the POTS. I've had a few occasions when I've wakened with mild AF and find that if I get up out of bed and move around, it's gone within 30 mins. or so. That made me wonder if it is somehow positional (many have issues with left side sleeping). When in full blown AF (mine typically last 8-18 hours), I use the pill in the pocket approach with a beta blocker to bring down the heart rate. My EP agrees with that approach since the heart rates I experience are not very high -- 110-130 maybe.

    You, on the other hand, experience very high heart rates, and that requires much more caution. Many folks on here with 18 hour afib are not going 18 hours with 180-200+ heart rate (I assume). It sounds as if you've lived with this for a long, long time. Even though your CHADS score is only 1, please, please consider anticoagulation to avoid stroke risk. And ask for a referral to an electrophysiologist ASAP. This is vital to your well being. Good luck to you.

  • Hiya, POTS of the type I am describing is rare and is relieved by sitting/lying down/putting your feet up.

    It might be worth looking up vagal AF? @CDreamer on this site suggested I look it up, I'm still looking into it, and does seem to happen when you're resting.

    There are many types of POTS, including hyperadrenergic (where you get dizzy lying down), so you'd have to log your symptoms and make a case to get checked out.

    For anyone affected, the only people to do the complete battery of tests for autonomic nervous system dysfunction (such as POTS) are the Autonomic Unit at the National Hospital for Neurology and Neurosurgery in London.

    The thing is, although I don't know enough about it yet, I have read some articles about the role of the autonomic nervous system in AF.

    So anyone who knows more about this, it would be great if you could do a post...

  • Boomdiddy: Yes, mine is definitely vagal in nature; I even bought an adjustable bed so that I can sleep more upright!

  • You have an awful lot to cope with Boombiddy and from your post it isn't clear if you are 'only' under the care of a GP. As others have said, an electrophysiologist is essential in finding the best management of heart rhythm disturbances. Alone the mental stress of wondering and worrying about what to do and when and how often must add to the misery.

    Unfortunately, the only person who can decide whether to call for help is you - others, including your doctors can give guidelines but they are not 'up the sharp end' when things go awry. My own rule of thumb is if the symptoms are new and/or threatening and I cannot help myself (breathing, Valsalva etc) then I would seek help. My GP advocates A&E if heart rate stays above 100 for more than 30 minutes but, like you, I'd have been there with every episode!

    As for feeling embarrassed about calling for help - I was thoroughly told off by a doctor for not calling an ambulance (!!) for a bad nosebleed with the comment 'you are a cardiac patient - don't forget that' (yessir). On my last trip to A&E the brainbox in the next cubicle admitted taking 5 doses of a well-known upper and it obviously had the effect of making him love words starting with f and b, especially when shouted very, very loudly. I detected no reticence on his part about demanding help from an overworked A&E department.😡

    Best wishes

  • Hiya Finvola that made me laugh! Yes I met some very demanding patients in A&E.

    The new diagnosis and the whole new set of problematic symptoms caused by propranolol and the resulting bradycardia has really thrown me, but thankfully I was able to explain that to my GP and I think she 'gets' that the POTS and the propranolol swear at each other but as yet sees no alternative way to deal with the conundrum.

    I am hoping to persuade my GP to refer me to an EP who is an expert in autonomic nervous system. STARS (Syncope Trust) recommended this and named two they think are suitable.

    My GP is consulting a local cardio (I assume a 'plumber'), whom she rates highly. She is a very good GP so I have left it with her but at my next appt with her I will have so many more questions, and if she can't answer I hope she'll refer me to the recommended EP.

    It is such a learning curve isn't it! I am still trying to learn to distinguish between some POTS symptoms and AF, and actually writing it out here and reading people's answers is helping me start to get some clarity...

  • @Boombiddy Have you been tested for: thyroid function, bio markers of inflammation (hsCRP, IL's etc): allergies? Hormones (estriol, estradiol, progesterone, testosterone) Low progesterone and low thyroid can interfere with the normal space of time between inhaling and exhaling and make it hard for you to breath normally. Low testosterone can make your breathing and heart function really bad (yes, women need this too)

  • Hiya traveler65, thanks for reply.

    I know thyroid is fine, they tested for it at A&E.

    But all the other stuff...

    I can't imagine my GP wanting to agree to all these tests.

    When I was 18 the breathing was more of a problem. At the mo, I don't feel 'I won't be able to breathe unless I do it deliberately' as I did then. (At that time I couldn't sweat either, and now I can, and I think this is because the POTS balance has changed and developed). I do however, recently, feel 'too tired to breathe'. Having in any case learned to breathe deeply from the abdomen, I don't worry about it. I know this must sound so odd, but it is not unheard of with dysautonomias like POTS. Oxygen sats are low though, around 92-95 and has dipped to 87 briefly. (I bought an oximeter recommended here recently, as I felt so brain-dead and slow...)

    The hormone balance stuff is interesting as it is also relevant to Ehlers Danlos too, for example as in the oestrogen-progesterone balance, higher progesterone causes more tissue laxity. This is why there are some 'stages' in life where EDS (and the associated POTS) can take a new turn - teens, mid 30’s, menopause... And for men with EDS, the male hormones protect the joints better by making muscle bulkier. (I expect it won't necessarily help them with POTS, gastro problems etc. though).

    CRP sounds familiar, that was done in hospital and is ok.

  • @Boombiddy Have you ever tried using reduced glutathione? This removes any pathogens and extra fluids in the space between your lungs and the lining around the lung. Also N acetyl cysteine is an anti inflammatory amino acid with an affinity for the lungs. This might help your breathing--or ratchet down any attacks that are caused by inflammation as glutathione is a master antioxidant of the body.

  • Hiya, thanks for this. I don't think I have any problems with lungs. It's just that the autonomic nervous system controls your breathing rate. It was a problem for me at age 18 but is not really a problem now. My 'too tired to breathe' feeling is not distressing as I know my body will breathe, as I have survived this long. I just may have slow resps at the mo due to getting used to propranolol and slowed resting heart.

    I probably do have inflammation due to everyday micro-injuries to tissues because of the Ehlers Danlos. Inflammation being the necessary first stage towards healing tissues.

    I need to get to grips with the AF first so may come back to this.

  • Have you been on the POTS website - there is a list of doctors specializing in POTs arrhythmias?

    I have similar history so know your dilemma well! I refused the Biso and felt a lot better, but interestingly it did help stabilize my BP

    I had 2 ablations so no more AF, take Pyridostigamine and now my BP is steady at 120 most days, it rarely went above 85 before.

    I think you are the expert on you and if you think you are better sitting things out at home and are more comfortable there, do it. If you would rather be reassured by having the medics check you out - ring 999 - I think I did a total of 3 times. I never received any treatment, was only ever observed and that included 3 days in acute cardiac unit. But at least I was in the right place if anything had gone wrong as I did feel absolutely terrible and couldn't lift my head off pillow - literally!

    Trouble with staying supine is that it can and probably will, make the PoTS worse in my case. Improving Vagal tone can help, as can avoiding any AF triggers but the 3 things that helped me the most were seeing a good EP and having ablation, being treated for sleep apnea with CPAP and HBOT treatment.

    PS I have autoimmune Myasthenia gravis and some minor hyper mobility but nothing as severe as you are obviously suffering.

    Also try looking at the Facebook page Autonomic And Autoimmune, I try get the link for you. Lots of good info if you read back through the posts.

    Looks like you got a good response and some really useful info!

    Hope that helps - best wishes CD.

  • Thanks CDreamer, lots to think about. I hope to get my GP to refer me to the EP STARS recommended to me. Did you see my reply to you on my first post? I can't remember exactly but I tried to put some useful info there for you. I was very grateful for your reply as I was even more confused then!

    I mean to prevent progression of AF by management as I think an ablation is out of the question because of the EDS, so it is even more important to get a neuro EP who understands the autonomic nervous system.

    Also, what you said re your BP being stabilised by the meds is interesting. Me too I think. That's the thing about POTS isn't it, you respond differently to meds, maybe quite idiosyncratically too. In hospital and when the GP took my BP recently, my systolic had gone up since I had started on bisoprolol but the diastolic not much. It is all so weirdly inconsistent! Yet I am exhausted and have no energy despite the improved (raised) BP. Having said that, they were taking supine and sitting BP, forgetting that with POTS it would be lower when standing or sitting upright without feet up.

    I am waiting to go for the Hypermobility syndromes rehabilitation course at Stanmore to help me manage EDS and its ramifications including pOTS. The neuro advised me not to exercise til I go there and do that. The problem is, Stanmore want me to get my sleep sorted before I go and I can't. Having said that I have discovered Sprayable melatonin which really helps but... I keep forgetting to take it and I hate the thought of sleeping, my body says "I don't wanna". If you have POTS I expect you are the same. Do you have a formal POTS diagnosis?

    I am sorry to hear of your autoimmune myasthenia gravis. I have no idea how that is treated or what it must be like.

    Best regards, Boombiddy.

  • Very interesting post and all the replies.

    You must have had your hankie out and waving it like mad to have got so many replies with useful information and ideas.

    One thing that I would say is that in your case 999 for a paramedic should be much sooner rather than later because of all your issues and complex interactions. Maybe it is OK for someone just with AF to delay for 18 hours but for some with just AF that would be too long.

    Two key things:

    1). The heart rate is not the only criteria it is the number of times greater than your normal pre-AF heart rate that is key - so for instance someone whose old HR was 60 is much worse off if there HR jumps to 120 than the person whose old HR was 100 and jumps to 150.

    2). It depends on whether you are on your own at the time (even if you normally do have someone there). You have to think what if I did collapse or take a real bad turn for the worse.

  • Had an AF attack a couple of days ago and ALL advice from medics is ring A & E immediately. Had a cardioversion and was home later that day. Had not had an attack for18months but you must not delay in ringing they all said the same. I also take Flecainide and Warfarin daily.

    Kind regards and the best of luck.

  • Hiya TenorJK, just want to say thankyou for making a reply so soon after having an AF attack. Hope all is well and settling down again. I will take on board what you said.

    Hope the episode hasn't taken too much out of you, and best wishes for a good recovery.

  • Thank you, been reading lots on this website(you were my first post) and have decided to stop drinking and lose 2stone in weight !!!!!!! Fingers crossed .

  • Thankyou for reply! I feel really honoured that I was your first post. It was so long, you must be someone with endurance! The very best of luck with your endeavours.

    The recent diagnosis of AF is making me get my house in order too. I am resolved to go to bed at decent times whether I like it or not, and I encourage myself that with that particular strain off my heart I will then have more energy in the day, maybe get out more and meet friends for coffee, lunch, chat.

    AF may actually improve our quality of life in the long run!

    Best wishes from Boombiddy.

  • Thank you

  • What an interesting post but regarding your af yes you do need an ep and you can ask your gp to refer you and if you went private for your first consultation you would be seen in about a week I personally would ask my gp to refer me privately to see ep of your choice initially . I saw my Leeds based ep privately I chose the ep I wanted to see and then he saw me on nhs at LGI and he has given me excellent advice and help and he does not feel ablation is the way to go in my case ,he has just conducted nuclear scans on my heart which have reassuringly shown no damage to my heart has been done .Good luck I sincerely hope you get the help you need.

  • Thankyou grandadbren1, I didn't know your GP cd refer you privately.

    I see the GP next week so may do that if she won't refer me to the neuro cardio on the NHS.

    Best from Boombiddy.

  • if you search for the ep which you have been recommend find out where they practice privately and contact their secretary who will then give you details of where you can be seen then you may need to ask go for referral letter or for them To supply medical details. The initial consultation would be about £150 and well worth it. You could still see the neuro cardio but you need to check is he an Electrophysiologist ? If not you have the choice in your hands to see an ep. I soldiered on with cardiologist inserting pacemaker and feeling dreadful and all he did was increase drugs however after taking things into my own hands and seeing ep my life was improved greatly seems I was overpaced and overdosed and all that was increasing af . it will be interesting to follow your case .

  • Thanks grandadbren1. Yes, he is an EP who also is specialist in the autonomic nervous system. I will take your advice as I prep next week for my GP appointment. Thankyou for taking an interest, I hope to let you know what happens. Anything to do with the autonomic nervous system might begin to fill in the blanks for a lot of AFers I think, I hope it is useful as I don't want to just whine or go on about myself.

    I am sorry to hear re your experience with cardiologist. I take it you went to an EP subsequently and they improved your treatment and symptoms?

  • Yes I subsequently went to ep however if I had known about arrythmia and af what I learnt on this site I would have consulted 10 month earlier let's hope you get a good diagnosis and advice