Hi I am 52 and usually have SVT, Ectopics and fast AF (Dec 22) I have a loop recorder. I take bisoprolol 3.75 and have flecanide as a pill in the pocket. Sometimes having little runs of svt throughout the day and my ectopics have flared up again recently worse at night with trigeminy. Sometimes feel like a gastro issue?. I have been feeling shattered and sometimes on standing up my heart will flutter a little then eventually settle, after walking I will sit down and when I stand again the ectopics start for around ten minutes. Always this time of the year my heart will be worse. Maybe the weather or stress I don’t know. I feel I’m getting worse slowly but surely. I have cardiomegaly and I have had an echo that showed slight leaks in the past but last years there was no mention of leaks but it showed concentric LV.. I rarely leave the house as I feel rubbish most of the time and haven’t had a holiday for years as I worry about flying and being ill. I am not under regular cardio review I download information from my loop recorder when needed but don’t have any scheduled follow ups. I just feel I have a bit of this and a bit of that and nobody is looking at the bigger picture. Meanwhile I’m struggling to feel normal anymore.
feeling not quite right at the moment - British Heart Fou...
feeling not quite right at the moment
Hi, thanks for sharing your story which sounds similar to my own experience during the past few years. It can be frustrating to be told things aren't quite right and yet feel like nothing is being done. I'm 52 and was very active with work and exercising regularly having bike rides 4 times a wk etc. Around 3+ years ago while giving blood I was told my hr was irregular and referred to my gp for some test. After an ecg, echo and a mri scan I was told I had mild lvh and a leaking mitral valve, also a slight leak on my pulmonary and tricuspid valve too. I was put on 2.5mg of bisoprolol to ease the workload on my heart but I felt awful, fatigued and lightheaded too. My hr dropped to 30 at times and I was rushed to hospital from work to be checked out and spent 8 hours in A&E. I have ectopic/palpitations beats and was diagnosed with bradycardia after stopping the bisoprolol as my hr drops to 36 at times. I had a loop recorder fitted last year as they need more information before deciding if I need a pacemaker but the worrying thing is I've had many episodes of bradycardia, feeling terrible for days and had another stint in A&E being tachy and having high blood pressure so they put me on a drip for 4 hours to bring it under control yet when I call the pacing team all they say is we will look at the readings and I hear nothing more from them. I also had an angiogram which showed a congenital birth defect too. So yet 3 years on after many test and weekly episodes of bradycardia sometimes tachy feeling rubbish, tired, dizzy, fatigued and weight gain due to feeling breathless at times I feel a bit forgotten. Sometimes when i stand up my hr will race up to 140 then it will drop down to 40 making me feel terrible. Also when these episodes happen I can feel my hr slowly drop and I become lightheaded and drowsy sometimes with uncontrollable body shakes so I rest for about an hour then it will usually pass and I will feel ok again. I'm just tired of waiting and feel like no one is taking it seriously at times but I also appreciate the nhs is busy and there are more people in need of urgent care. Sorry about the essay but I hope it helps you with regards to your own experience and let you now your not alone. Best wishes, Taz.
hi thankyou for your reply and sorry for the delay. I do appreciate your reply and our history is very similar isn’t jt. The same leaks that you’ve had are the same I have experienced too only last time I went for a scan 12 months ago the sonographer couldn’t see any leaks anymore? Can they resolve on their own? Just this LV remodelling. Nobody seems to look at the whole picture and when you attend any appointment time feels limited to explain everything that is going on. Thanks so much for sharing your story with me it has reassured me that there is someone else with the same condition and concerns etc I hope we can both get some answers and treatment and not just feel like we are plodding along trying to cope x
First of all look up the Vagus nerve. There is lots about it. Gastric and heart problems are often related to this nerve.
High humidity affects the heart and this has been a generally wet summer and especially wet Autumn. If you have a hygrometer you can check the relative Humidity. Ideally indoors it should be 40/50%. Anything above 60% is likely to cause discomfort especially sleeping overnight.
Worth describing your overall concerns to your GP as anxiety will make things worse
Hi thanks for your reply and sorry for the delay in responding. I think the humidity and air changes temperature and flow play a big part with starting my irregular rhythms. I went to the gp yesterday as I have felt worse but left the surgery feeling no better and no answers x
Sorry I didn't reply earlier but have been In Austria the last week. Very cold so made sure I covered my nose if possible when out and about so the blood vessels are Less likely to constrict.
What was very noticeable was the dryness of the air inside our apartment. It was generally 50% and in the bedroom maximum of 55% in the morning after our both sleeping in the room. Felt very good all week and slept the best I have for quite some months.
At home the RH is generally around 65% before sleep and over 70% on waking up.
So this business about humidity is probably very relevant I feel, coupled with weather conditions.
Did you measure your homes Relative Humidity with a hygrometer, in particular those rooms you spend most time in, including the bedroom, before and after sleep?
Hi I hope you had a lovely time in Austria. I don’t have a hygrometer but it sounds like something worth investing in. I’m like you when in the cold I need to try and keep my nose/mouth covered to prevent the cold air affecting me. This time of the year September onwards through to spring my heart seems more irritable. The changes in air flow and temperature certainly affect it constantly anyway so I need to look further into the humidity as you suggest. Even I can notice when the house is cold and also too hot with my heart I need it to be a constant temperature so I think I do need to start monitor humidity. I’m glad you had a good week and slept well whilst you were there.
Taz has given you some very useful information.
There has been some discussion on this board in recent days as to whether our cocktail of medicines are looked at holistically or whether one is prescribed for one problem then another for a different problem and eventually they might start to conflict with each other.
I don't know how many medications you are on but might be worth running them past your GP or pharmacist to see if there are any adverse effects.
Thankyou this is a good idea. I am on bisoprolol 3.75 for almost a year it was increased following the episode of fast AF. I have flecainide as a pill in the pocket.
Hi there and sorry to hear what your going through...I have been lucky so far as my flecanide and small mix of bisoprolol have really helped with my af , but I know what you mean about feeling forgotten..I was supposed to have an echocardiogram every year to check on my heart with the medication and my slight regurgitation of 3 heart valves and an ecg to check the flecanide isn't causing any other unwanted heart rythyms , but have heard nothing again this year and when I phone up I either get the answer machine or the very abrupt cardiologist secretary who always says she will find out what's happening but never does or gets back in touch with me...so far i have been lucky as the meds seem to control the af but I know all that can change in no time at all...so I know where your coming from and how worrying and frustrating it is...I will be phoning my gp up next month to talk to him about it and maybe you should consider doing the same especially as things are not the best for you right now...Good luck and best wishes...
Hi thankyou for replying and I’m sorry for the late reply. I also have a very abrupt cardiologist secretary who doesn’t reply. I have this vision of them saying ‘not this person again’ which doesn’t help and it doesn’t make you feel like you can approach them for advice, concerns or to ask for an appointment. I went to see a gp yesterday which wasn’t if any help but have made another one for my usual gp next week. I hope you’re getting some answers too x
I have similar experiences and they diagnosed me with Potts and a load of other things. But what you are describing sounds very like circulatory problems with your blood pressure dropping and increasing with standing and this makes your ability to self regulate your heart rate back to normal longer (around 10 to 15 mins sometimes longer) but yeah maybe have a look into it, it’s postural orfhostatic tachycardio syndrome, maybe that helps I don’t know? Good luck with it all xx
Hi Thankyou for your reply and sorry for my late reply. I have often thought about pots as I can go for a walk then sit down for ten mins and stand up and heart can either race or have ectopics it eventually corrects itself. When I bend down to the washing machine my heart can go into svt so I’m always really careful bending and standing suddenly. So I have wondered if I have POTS. I think I need to read more about it. Thankyou x
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