POTS and bradycardia

[cmep37]

I have POTS (I'm not on any medication as everything I have tried has either had no effect or the side effects were worse than the symptoms).  My cardiologist has told me there is nothing left for me to try so I am just managing on increased fluids, increased salt, support tights and as much exercise as I can manage.  My average heart rate after standing for 5 minutes is 140+BPM.  I've always had the odd evening where my resting heart rate would fall around 7PM but in the last 6 months this has gone from happening  once a fortnight to every evening.  Now my resting heart rate which during the day is normally mid 60s drops around 7PM to mid 50s, by 9PM its high 40s and by 11PM it's low to mid 40s.  I start getting symptomatic when my pulse is around 50BPM - I'm short of breath, dizzy and very tired and as my HR drops to low 40s I also lose feeling in my hands and feet.   I think my HR drops even lower when I am asleep as when I do get to sleep I'm constantly waking up with a jolt of adrenaline yet my pulse is still low 40's .  When I stand up, POTS kicks in and my HR rises but I can't sleep standing up!  My blood pressure is also lower than usual although not awful - at night it's usually around 89/50.

I have tried taking a walk late evening to try to get my HR up - that hasn't worked, I've also tried drinking coffee at 9PM - it works for about an hour but then my pulse drops even lower than usual.  My GP says that in other patients she's be starting to think about a pacemaker but from what I've read it's not recommended for POTS patients.  I haven't got an appointment with my cardiologist for another 6-9 months (I'm in the UK and all appointments have been delayed by coronavirus). 

Has anyone any similar experiences or any ideas of what I could try?  

[Pistol]

Dear @cmep37 - having a HR as low as this AND the symptoms you describe is not common for POTS. Have you had a halter monitor? It is possible that your HR increases are a compensation mechanism from the bradycardia. Depending on the type of your bradycardia a pacemaker might fix your problems. 

18 minutes ago, cmep37 said:

My GP says that in other patients she's be starting to think about a pacemaker but from what I've read it's not recommended for POTS patients

True - pacemakers generally do not improve HR irregularities in POTS but when your HR runs slow like that it may not be the POTS what is causing it. I used to pass out and take seizures and my autonomic specialist whitnessed this in his office once. He said it looked exactly like what happens with asystole ( the heart actually stops ). He implanted a heart monitor ( called an ILR - implanted Loop Recorder ) that monitored my HR for 3 years continuously. In my case the drop in HR was brief and a compensatory mechanism by the ANS - so no pace maker was recommended in my case. 

It seems different in your case - your HR stays low and also causes significant symptoms. So if I would be in your shoes i would consider a pacemaker if your PCP or cardiologist agrees. Since you have significant symptoms with your low HR I would not wait 6-9 months to see your cardiologist - can you ask your GP to recommend an earlier appointment due to the severity of your symptoms? If that is not possible I would request a monitor for a few weeks that shows the bradycardia, this way the severity of it could be proven. Your GP may also order an echocardiogram ( if he has not already done so ). 

[cmep37]

Thanks for your reply Pistol and I'm sorry to hear of your problems.  I've had what I now know is POTS since I was a teenager (I'm now 41) although I was only formally diagnosed about 5 years ago.   I have had several Holter monitors over the past few years which showed sinus bradycardia but no arrhythmias - my cardiologist didn't seem concerned when I discussed it with him when I last saw him although it was much less frequent then.   He seemed to think it was just a different way my ANS was malfunctioning - my parasympathetic system was overactive in the evening.   However I have noticed a tendency by all my healthcare providers to blame everything on POTS/EDS!  I've never had an echo - when I suggested one my cardiologist said he didn't see the need!  I will ask my GP for an urgent referral to my cardiologist although with the delays caused by Coronavirus I'm not holding out much hope!

I wonder if it might be connected to vagus nerve problems - when my HR gets over about 120BPM and there is food in my stomach I get extremely nauseous and then retch violently until I vomit (usually only a mouthful) and then I'm OK.  The gastroenterologist I saw thinks that my vagus nerve is stimulated by my high heart rate and I have read that sinus bradycardia can be caused by an overactive vagus nerve.  However I've had the retching problem for nearly 5 years now and the bradycardia is only getting worse so maybe not..  My other thought was whether it could be linked to perimenopause - as I said I'm 41 and am probably approaching that milestone!

[Amyque]

I have the same symptoms as you, pots on standing and brachycardia when sitting down from time to time usually worse if I try and push past my pots symptoms it make sure the slow rate come worse when I sit!! Was diagnosed by. Holter for pots and they did a pet ct scan yesterday to rule out serious causes causing the pots symptoms xx

[JennKay]

@cmep37- I know this thread is over a year old, but how are you doing now? What eventually happened with the pacemaker discussion? I too have an overactive vagal nerve and have also experienced a number of the bradycardia symptoms you described, but my symptoms largely resolved after stopping beta blockers (I tried metoprolol and atenolol, failed both). I definitely got tingly hands and feet when I was on the beta blockers, particularly when my heart rate was low in the evenings. I am kind of wondering if the beta blockers actually made things worse for me. Am hoping and praying things improve with time.

[cmep37]

👋@JennKaysorry to hear you are also having problems with bradycardia.  My bradycardia was definitely worse when taking Ivabradine and Propranolol so I would agree that BBs could cause it or worsen an existing tendency to it.  Actually mine is not as bad since having Covid last Christmas - it's now once a weekish rather than every evening and even when I am bradycardic, my HR doesn't drop quite as low - more mid 40s than low 40s.  However it's swings and roundabouts as my tachycardia is worse - my average HR after standing 5 minutes used to be high 130s,low 140s, now it's mid to high 140s.  In terms of my cardiologist, I finally saw him yesterday and to say the appointment was not a success would be an understatement! (I won't bore you with all the details but you can read about it in the thread Want to Scream if you are interested). He seemed to think the HRs I was experiencing shouldn't have caused me any issues, despite my GP being concerned by them.  There was no way he would have agreed to a pacemaker!

[Lburnham]

Hello, I'm not sure how helpful this is, but I do have a pacemaker and it was implanted because I went into cardiac arrest (asystole for 40 seconds).  The pacemaker has completely resolved that issue, as it will not allow my heart to stop. I'm still left managing presyncope symptoms, taking salt, fludrocortisone, lots of fluids, etc.  But overall feeling pretty good.  I'm still confused what happened, whether I have POTS or not, etc. Things do seem to suggest pacemakers are not that helpful for POTS, but mine is specifically designed to detect physiological changes and work to prevent a faint.  I wonder if this technology would help people with POTS or maybe not.  In any case, it's a Biotronik Edora DR-T - dual chamber.  When I got it, my Dr. said it was the only one on the market (or the only one he implants?) that can do this.  I'm sure things have advanced in the last few years as well.  I guess I'm here to say, don't fear the pacemaker if it's recommended, it has helped me and I have not fainted since, even if I still get some presyncope symptoms and manage other symptoms, at least I won't faint and have my heart stop again.

[Sushi]

On 11/24/2021 at 10:25 AM, cmep37 said:

In terms of my cardiologist, I finally saw him yesterday and to say the appointment was not a success would be an understatement! (I won't an you with all the details but you can read about it in the thread Want to Scream if you are interested).

I have a pacemaker and one of a couple reasons my electrophysiologist recommended it was tachy-brady syndrome and pauses. I know that in the UK you need a referral to see an electrophysiologist but they are SO much better with rhythm/rate problems.