I made a post a while back but have had continued issues and not sure what to do at all.
My original issues stemmed for a few years now:
Unable to tolerate being stood up still for more than a few minutes.
Standing heart rate always high in the 100+ but rare occasions it's down low.
Lots of episodes of orthostatic hypotension when getting up. (worse when hot weather or after excercise)
Cannot tolerate excercise as well. Always short of breath not far into the routine. Anything to do with leg excercise makes me very short of breath.
Dizzi episodes of low blood pressure feeling when sitting but had this when walking from time to time. (Note: neve passed out).
HR every morning getting up is always 100+, high as 193.
When I sit down, my HR dramatically changes rythm to less than 70 without fail even when it's been racing when stood up. Resting is in the 50s.
I've had 7 day monitor, echo and countless ecgs. A n E thought it was POTs as when doing lying down ECG synus rythm of 80~ BPM. Standing up it shot up to over 160+ with nurse asking if I was feeling ok at the time.
Echo and 7 day monitor was done through cardiologist privately. I was informed zero out of beats on the monitor and noted I had a "fast" heart at times over 20% of activity was note as fast.
I was informed my heart is healthy and no issues. I do trust the experts but it's hard to determine why I continue to get this.
I was told the morning HR speed was insignificant.
I am on Beta blocker Bisoprolo 2.5. I take it in the morning but not before waking up of course and my HR is still high. It eventually settles.
I've noticed some episodes of feeling my heart beat at night near bed time or after dinner when sitting down but not every day.
I went back to my GP and they were sympthactic and referred me to NHS cardiologist. They reviewed my case and responded saying I have been sufficiently investigated already and no need for further investigation.
The cardiologist informed me I would still get dizzi episodes and to ignore them. It was mentioned that if I were to do a tilt table test, the outcome of it wouldn't change what medication I was on, only I'd know it was low blood pressure issue.
I was informed to drink 3l a day and add more salt. I have tried this but since taking Bisoprolo my acid is really bad, omeprazole doesn't help with this either.
Im just so confused and not sure what to do..
Has anyone got any advice? I'm just scared of my heart giving out.
I find walking and excercise is limited and worse than before being on Bisoprolo. I feel like excercise could easily cause me harm if I push it.
I have in my own mind it sounds like POTs but not diagnosis and no confirmation. I am literally scared to do activity from my seat because I am afraid any strain is going to cause me issues with my heart. It sounds silly but I don't particularly feel reassured or confident at the moment as the symptoms are persistent.
Does anyone have an idea if this sounds like an arrythmia? Its what I am most worried about it being.
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Jackle88
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Hi Jackie. You are lucky to have had such straight reassurance about your heart, and advice about having had sufficient investigations. All from Cardiologists.
In spite of this, you still sound v anxious, to this reader.
The bit that caught my eye In your post was ‘I'm just scared of my heart giving out’.
That’s a horrid way to feel. Counselling can be v helpful for health anxiety.
Yes this is true with the reassurance, but I now have anxiety as a result worried why I have ongoing symptoms. I then have a new symptom or feeling and then I worry this hasn't been caught by a monitor.
It's a vicious cycle and I never got the bottom line of being categorically told "this is what's causing your feeling of about to pass out from time to time either standing/sitting". If this makes sense.
I am trying to not let anxiety take over but I keep thinking, I am only anxious because of the symptoms I get ever now and again.
The holter monitor would have picked up any actual arrhythmia - that’s what they’re designed for, so it sounds more like you probably have a rate issue, which pots would count as. I’m in a slightly similar situation to you in that my resting hr is down in the 50s (where 2 or 3 years ago it would have been 70 to 80), but ever since I developed a relatively benign arrhythmia 11 years ago, just talking makes it jump 20-30 beats, and I easily hit 180+ exercising, but I know mine is definitely not pots. I recently had a 24 hr holter which showed ectopics (both ventricular and atrial, but we already knew about the VEs as they’re what trigger my arrhythmia) and a small amount of nocturnal bradycardia, plus that I exceeded both my safe maximum and minimum. Was subsequently told my heart is fine, but the main difference is they won’t refer me to cardiology to actually discuss what’s happening even though I have a pre-existing cardiac diagnosis 🤷♂️
Re the medication side, my understanding is that there are other drugs other than beta blockers that are useful in managing pots, so that would seem to be a little bit dismissive, and have you explored increasing the bisoprolol? It’s a bit of a balancing act, as you don’t want your resting hr to go too low, either. I believe fludrocortisone can be used to decrease the amount of sodium lost in urine and help alleviate symptoms that way. You may have been here already, but it might be worth a look:
I think the main thing to take away from my reply is that if you had symptoms on holter and it didn’t pick up an arrhythmia, then arrhythmia is unlikely to be a concern or part of what’s happening for you.
Hello, thanks for your reply. I am sorry to hear about your arrythmia - did it take a while to catch? As I worry mine is the same deal or would a 7 day be sufficient for most all of them?
My anxiety tells me that what if it only occurs every now and again that conincide with my symptoms.
The cardiologist didn't explain to me why my HR is fast in the mornings, fast when standing and I get every now and again the feeling of out about to pass out either sitting/standing no discrimination.
I have looked at this website yes. I seem to only tick a few boxes - HR is higher when stood for any period, dizzi only from time to time and it's very random.
I know I have orthostatic hypotension, but only comes about when I sit too long or excercise legs or hot weather.
That sounds so scary, very sorry you are having such a difficult time. I would look up Dr Esselstyn "Preventing and Reversing Heart Disease" and read his book
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Planning For End Of Life Care
Will this Hell never end
Light at the end of the tunnel 
Ectopic beats one after the other
At my witts end with pain and worry.
