Some of you may recall that for some years, I've frequently experienced ectopic beats.
They've been calmed down with a lowish dose of a beta blocker (Propranolol) and don't usually give me too much cause for concern......until about a week ago when they re-emerged, but with a different manifestation to the usual.
This time, instead of them being evident when mainly at rest, just getting up to go to the loo & back (activity) would bring them on, with some breathlessness. They felt different too.
I was also still experiencing re-occurring tummy problems that hadn't completely cleared up from previous post.
Tues night I went to bed feeling quite rough and by 2am I felt really poorly. My heart rhythm was all over the place and my chest was tight. I woke David and he called for an ambulance. I arrived at Colchester A&E at 5am.
I had lots of blood tests and chest x-ray and constant ECG's.
Everything was reasonably ok, ruling out pulmonary embolism, adrenal crisis, thyroid, etc, but the ECG did show my heart kept slipping into a short-lived SVT rhythm. They increased my Propranolol till I see my cardiologist next Thu. I was home by midday Wed.
Oh!..... and I may now have diverticulitis too! Joy!!
Since then, I felt much better yesterday after a good night's sleep but last night my tummy was uncomfortable again and I woke this morning with a stinking cold! (LF test was negative, but results not particularly reliable, so who knows!)
It's more likely to be a coincidence, but feels like everything was thrown out of kilter again after my tooth extraction!
It takes such a lot of effort to keep things stabilised, but just one tiny thing can turn it all into chaos again!
I know it'll all eventually come good, but I'm definitely feeling a bit fed up at moment.
Learning all the time though!
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Kendrew
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Sorry to hear you've been so poorly. I have diverticulitis too and it's been really bad the last few months which I do wonder is due to the tapering of the meds or the adrenal glands not working. I'm trying g to stick to a very bland diet to see if it settles. Hope you soon feel much better .
Thankyou. To be honest, I try to think of others on here who have been (and are still going through) more challenging times than myself and remember their resolve and determination to overcome their obstacles.
I'm not going to lie though.....I do feel a little bit battered at moment.
I try that too Kendrew but sometimes it all just becomes too much. One thing I’ve noticed here is that everyone is so supportive and it’s ok to let your feelings out. Battered is a good description of how these illnesses can make us feel. Take care
So very sorry to hear this, my friend ☹️- it’s no wonder you’re fed up! Without intending to minimise how you feel I reckon a diagnosis is half the battle and I’m sure your cardiologist will come up trumps for you. For now, take it easy and allow yourself to be spoilt.💐
The joys of arrythmias!!! But you did the right thing in calling 999, the ED saw the evidence so there won't be any argument. Now they just have to decide which it is and what they want to do.
ALL Just AWFUL so sorry for you!!!! plus Tooth Extraction.... Glad not heart attack and hope all comes back into line and all well soon. I send the same message to your whole body now that I send to my immune system ... Okay guys stop racing around all over the place and get into formation! Do the job you were meant to do. ! Sending big healing!!! xo
I hope you feel much better very soon and thought I'd share my experience with you. I too have frequent ectopic beats and have bisoprolol for that. Last November or so I went to hospital by ambulance after waking up feeling very very rough with a big chest pain down my sternum it felt like. Like you the tests did not indicate anything untoward and I was discharged the next day.
Since then my cardiologist arranged for me to have an echocardiogram and a Myocardial Perfusion scan. The latter showed parts of my heart were not getting enough blood supply and I am to have an angiogram to show more precisely what's going on. Maybe some points to discuss with your cardio.
Sorry to hear that Kendrew, hope you will soon feel better and get back on an even keel. There’s always something lurking in the shadows ready to jump out and scare us! All the best, take care 💐
No wonder you feel fed up. I am glad the nasties were ruled out. I hope the cardiology tests are equally reassuring when you see them. It would take me days to get over that experience but the dealt with you thoroughly. I had my Aorta routinely checked but have heard nothing. I hope no news is good news - it used to be. I have diverticulitis an attack can take months to settle down. Easter indulgence ( small) has made it flare up again. It is relentless. I recognise a stress response that kicks everything off again too. It’s like a mad balancing act. Good luck!
Thankyou. I had a mild kind of IBS in my 30's to 40's but had no real problem for years. ED doctor suggested current digestive problems were diverticulitis from symptoms....... like lower abdominal discomfort, particularly on left side, windy, spasmy pain, sore bruised feeling, etc.
The discomfort seems to fluctuate and tummy seems easily irritated at moment. I think everything is beginning to settle down one day and then the next say, something has caused symptoms to flare up again. Is that the kind of 'pattern' you see?
Yes it is. I get precious short periods when I feel fine but they are fleeting. I hope this dreary phase is going in the right direction. Keep us updated about you. External factors throw us off course. Whatever I caught from the coughing guy on the plane has really set me back a lot. I think it might have been Covid again, it was so sinister and I am still not right. My Diverticulitis/ Diverticulosis was diagnosed by a colonoscopy and a camera investigation. Unusually there is a boil type pain on the right of my lower abdomen. The right side seems to affect people of Asian heritage for some reason. My fear is that in spite of all the invasive tests they’ve missed something. I have never vomited so much in my life. I can almost do it at will. It’s hard having a set of unpleasant symptoms and a broken, demoralised health service.
That sounds so unpleasant SJ, and almost identical to how diverticulitis affects my sister. She doesn't like talking about it but I know she can become really poorly, and at its worst she can vomit profusely and experience quite long and sustained periods of diarrhoea.
I know you have many health issues that you're dealing with and trying to juggle all the different required treatments etc, must be so challenging. Just one of your conditions would be a challenge in itself for most people!
To potentially have covid on top of everything else just compounds the inability to recover speedily and effectively.
I'm so sorry you're going through all this. You do so much for all of us on here. If I could magic up a little respite from it all for you, I absolutely would.
Sorry that everything seems to have come at once. Hope all these individual problems start to be resolved. Deal with one at a time. You’ll get through. Gentle hugs and very good wishes. Xx
I have SVT and experience ectopic beats and palpitations on a sometimes regular basis. Some episodes last 30 seconds some over an hour and seem to come on for no reason - I can just be sitting in a chair or out for a gentle walk! I do find though that I seem to get more each time I change my Prednisolone dose.I hope it all settles down for you soon.
Thankyou ❤ Haha!.... perhaps I should look at what's happened as a renewal too..... get all the 'rubbish' over now, in time to enjoy a healthier summer.... hopefully!
It's definitely reassuring to hear that quite a few others like yourself, experience them too. Seems a lot more common than I'd realised. Thankyou for responding.
It’s hard either way but please try not to worry. With VT, which I’ve also had, the most important thing is to be hydrated with good accounts of electrolytes. If I have a day when it goes on all day, I drink some electrolytes and boom, it settles. X
VT is the ventricles, the larger, lower chambers beat too fast to be effective. SVT is supraVT, "above the ventricles", so the origin of the electrical fault is in the atria, the smaller upper chambers, and they are involved too.
I did have a look and realised the definitions were a bit complicated!! Found one about reading an ECG and differentiating them from each other that suddenly mentioned rabbit ears on the trace - which described the effect brilliantly - the rest wasn't so reader-friendly though.
Really, SVT is relatively benign, just a nuisance although it can make you feel quite rubbish. But it does need to be identified and clarified what the underlying cause is because it MAY be related to something not so benign that needs to be dealt with.
It is worth keeping a diary to see if you can identify triggers - no two people are the same, some can't drink coffee, some can't drink alcohol for example, but blanket restrictions don't make sense, they just make life boring! And coffee has actually been given the green light.
I have a pulse oximeter and that gives me an idea how fast my heart is beating. If it goes above 125-130 for long I might seek medical help but twice the ambo has arrived and got a trace - and by the time I got to the ED 10 mins away it had stopped! And I'd not been waiting more than 10 mins for the ambo either.
Your explanation of SVT v VT was so easy to understand and if I can now hopefully receive confirmation that I am indeed experiencing SVT then your words are quite reassuring. I'm fine with discomfort if I know it's benign.If its something different then I'll deal with that, as & when.
I've started a diary as you suggested and I have a pulse oximeter too, which I have used a couple of times over past few weeks, but only to check my sats level.
My BP monitor gives info on pulse rate though and I take BP every 4 or 5 days.
Ten mins waiting time is really good. I waited 3hrs Tues night! I promise I'm not complaining though as the paramedics & ED staff were attentive, reassuring, competent and very thorough. Everything I needed.
I know - 3 hours is not bad given the state of things at present though! The main problem is that the ambos are sitting outside the ED because the ED is full. If you have someone with a car - use the option. Central chest pain is always a priority, but they can't divert an ambo parked with a patient at the ED. Get there yourself and you are going to be seen.
If my symptoms had escalated, David was going to drive me there. When I arrived at ED, the corridor was lined with trolleys full of people (older than myself) who all looked so poorly. I was wheeled into a large bay (big enough for 2 beds) and right next to the nurses station. (Some of their conversation was hilarious) I was away from the main cubicles so I had some quiet and privacy.
They might have LOOKED ill, but they were not as at much risk as you with an undiagnosed arrythmia. Once they know what is going on, you are filed - not alphabetically, but in order of risk to life! If you are waiting ages in the ED - be grateful, there are people a lot sicker than you!
Do try not to worry, and rest up, kendrew. It makes my heart problems worse to fret. On bisoprolol plus meds various, also have IBS. Together with GCAPMR it's a merry combination! Hope you feel better soon 🙂
So sorry to hear you are going through all of this, I too have diverticula’s disease, it’s a nightmare sometimes when they add an xtra meditation in the mix but I have other GI issues too. Thank goodness it wasn’t a heart attack but you did the right thing and got straight to hospital, now rest time.
Hard luck, I hope it settles soon. I feel, too, that my body didn’t like my tooth extraction, save hit other problems since! My hubby was diagnosed with diverticular disease a year ago, but I changed his diet (40 pages of printed diet from consultant) & he’s been stable for a while. No processed foods at all, no ready meals means more work,but a good result! I have been taking 16 Propanolol tablets a day for the past 3weeks, as a trial, but it brought side effects…but today starting one higher dose time release tablet per day. I have had hypertension for about 20 years & take one small tablet for it, but have now developed orthostatic hypotension…& the two are fighting each other! My pulse rate is about 48 right now so I’m getting a lot of breathlessness. It has struck me that these things take longer to settle & get under ‘ongoing’ periods of being settled, & a need to be patient! Good luck!
I’m really sorry to hear if your latest crisis. We never know what’s round the corner! I’ve had ectopic beats for at least a couple of decades and arrhythmia now joined by af, to complete the party! It can be frightening and I’m pleased you’ve had attention and referral promptly. Good luck and I hope it all settles down soon.
sorry to read this but wish you better days. A colonoscopy to rule out cancer in January revealed diverticulitis . I read that omeprazole and Codeine MAY be a cause in my case. Cutting our fat seems to be helping. Good luck
Sorry for your struggle, it just gets too much when so many things going on at once......hope you get dealt with soon!....flooded with pain myself and other things.....we push on together!.. keep us posted...we will win this horrible battle! 🙏
You're clearly experiencing some health challenges of your own at moment so I hope things settle down soon for you too. It can be so frustrating though can't it?
I'll update as soon as appropriate but wishing you well in the meantime. Really hope you can get your pain under control soon.
Oh Kendrew….as if you needed all that. No wonder it feels overwhelming given all the new health woes at once. I’m so glad your symptoms were thoroughly investigated and that a cardiology appointment was scheduled so soon. You may feel less worry knowing a specialist in that area is following up who will be able to provide you with more detailed information.
Hopefully you can get some form of diagnostic test done to properly diagnose your gut issues. My diverticulitis was diagnosed by a contrast CT scan the day after a hospital visit for left abdominal pain, and confirmed with a follow up colonoscopy . I will say that I have gone through some challenging times with this condition but have learned how to respond with diet and rest.
For now, just try and rest and treat your cold symptoms, perhaps adopt a clear liquid or bland “beige” diet to see if you get some relief. If you find your mind racing or weary about all that’s going on, try to focus on one area of concern at a time (as my therapist used to say, small manageable pieces).
We are all here if you need to chat/vent….so post anytime. You have provided so much support and insight for many of us….now it’s our turn to return the favour! Take good care, sending healing vibes and big hugs.
Thankyou for such a kind and thoughtful message. Yours and every one else's support and advice really makes such a difference and I definitely feel supported. ❤
Oh my Kendrew. A triple whammy for you. I truly hope things have gotten a bit better and that the cardiologist has some answers. Nothing worse than not knowing what it is. Why do these heart things happen so often through the night? Take care m'dear. Hugs. xx
I am experiencing ectopic beats as well and they can be quite scary. I have had 3 cardiac ablations in the past for Afib and other arrythmias. After my last one in 2019 things were quite nice and was feeling like myself again until GCA and then covid. At least my heart seemed to be ok through all that, I continued to have little runs of ectopic beats but nothing to worry about. About a year and a half ago I went into Afib with RVR my heart rate went up to 185 they did an electrocardioversion in the ER which put it back in normal sinus rhythm and have not had that issue since. This past January the ectopic beats started increasing along with PVCs and pacs. So the EP put me onPropafenone it didn’t work and ectopic beats increased almost continuously. Some don’t feel these ectopic beats and some do, I feel every one. EP changed med to multaq which has helped, instead of every other beat being ectopic, it is every 5 th beat and the short runs of vtach have lessened quite a bit. My EP feels it maybe the Afib trying to break out. It seems the lower I go on prednisone the more this happens. They did a cardiac cath and echocardiogram and both showed no blockages which is very good news. My EP is worried about inflammation in my heart so ordered a Cardiac MRI. There is only one Cardiac MRI in the area (I guess they are few and far between ) so don’t know when this will happen. I am due to go from 4.5 on prednisone to 4mg tomorrow.
I also had diverticulitis and after 4th attack I had surgery last November which went well and I feel so much better and no further attacks. It is nice to have something “fixed”.
Sorry about the long reply, it’s difficult to talk to others ( friends and family) as they really don’t understand how difficult the GCA journey has been. I have been feeling more depressed and a bit hopeless of late. So thank you and I hope your ectopic beats and diverticulitis lessen each day.
Thankyou for taking the time to respond but please don't apologise for the long message. It was interesting to hear your 'story ' and I appreciate you sharing it with me. You too have clearly had much to deal with, and it's completely understandable that you would feel as you do.
When multiple 'obstacles' to our recovery present themselves, it undoubtedly feels quite overwhelming, and as if we're never going to achieve any progress.
So pleased your surgery has eased the diverticulitis symptoms. Long may that last.
As for friends and family, I think all of us on here would agree with you.
However many times I try to explain or show them helpful information, none of my friends or family get it! I'm constantly being judged, questioned, misunderstood, disbelieved. Very disheartening.
Thankyou again for sharing, and I truly hope things improve for you quickly too.
My a/fib was always worse if I flared - and it was part of the reason I was on a higher than usual dose of pred. The cardiologist was confident it was the autoimmune part of PMR that damaged the electrical cells and the a/fib was colely related to the inflammatory process.
Sorry if this is a silly question, but is that damage to the electrical cells permanent then or can they rebuild/regenerate/improve, if inflammation/PMR diminishes??
True, I went through several rhythm control drugs before my first ablation. Not to mention some of these meds have very serious side effects. I know I will need another ablation (my 4th), I think my EP is waiting for either the Afib to become more sustained or I’m lower on daily prednisone.
Most studies are done in a sleep lab. I don't know why they call it a sleep lab, as it should be called an "I can't sleep lab. The one used for hubby and I was cold, with a mattress that was used for torture in a past incarnation. My first test was an at home sleep study. Less expensive for insurance, and accurate. It will track your heart, just not brain wave activity. It is super easy to do. You might request an at home sleep study to get you and your doctor pointed in the right direction.
Sending best wishes Kendrew 💐 and hoping that your cardiologist gets a grip on things next week. You give such a lot of support to everyone on this forum.
Do try magnesium supplements eg magnesium glycinate. Magnesium eliminated my ventricular ectopics and will often improve AF. We are nearly all deficient in magnesium and need at least 400 mg of elemental magnesium a day. Depending on which supplement you use it will tell you how much magnesium is in it.
In the blood maybe - not necessary in the cells. The blood scavenges from the stores in the cells to keep the level up - it can be OK in the blood while the cupboard is getting pretty low!
PMRpro is correct, you would need a specialised test (red blood cell magnesium level) to give a true reflection of your need for magnesium. Most doctors won't bother with this. It's well worth trying to boost your levels anyway, magnesium is vital in so many metabolic processes. Dr Carolyn Dean has written about this at length, her book makes interesting reading for anyone who has AF or any sort of electrical abnormality of the heart.
Intra cellular magnesium, whether in rbc or muscle cells is not in balance with plasma levels, that's the point of the test. Rbc magnesium is the recognised test for intra cellular magnesium but not easily available. I've never heard of a muscle cell magnesium test (DOI - retired doctor!)
Thank you, that's a fascinating article! I agree symptoms of magnesium deficiency definitely trump the lab results. I never had any blood tests, Dr Dean in her book only mentions the rbc levels, but I think her writing predates that article, and she does not feel they are "required". Fortunately magnesium supplements are relatively cheap and do not need a prescription - just as well, as the medical profession in general are woefully uninformed on the subject! My GP only offered me beta blockers, I discovered the root cause of my ventricular ectopics from my own research and treated myself. As indeed many people on this forum are doing with respect to a number of health conditions.
Here in central Europe the first question asked if you complain of cramps is whether you have tried supplementing with magnesium - on every supermarket shelf as pretty much everyone knows about it. On the medical wards here, anyone who triggers their cardiac monitor for arrythmia has a nurse arriving in short order with a little bottle of magnesium pidolate to take. There is a lot done here that UK doctors dismiss as woo - but they do work more often than not!
It dates back a long way though - there is a long tradition of herbal medicine and alternative therapies and here they embrace it rather than dismiss it. One of my treasured treatments is needling, "Quaddeln": repeated sub cut injection of lignocaine/steroid/even saline to form tiny blisters under the skin and which stimulate the underlying muscles to relax and "heal themselves". Intensely painful while the needle is in but goes when it is removed - until the next one goes in - almost no-one turns it down and many of us request it and accept the offer with delight. Because it works! My rheumy is particularly good at it! He is also VERY adept at placing his finger on the exact position he needs to attack ...
I can't really help there as I have no idea what is available in the UK - the one I use is only available in Italy and France! There have been several posts about it in the past. Just don't take too much at first - some can have a very laxative effect!!! Supposed to help getting to sleep if you take it late evening.
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