Jump to content

Anyone got a pacemaker and POTS?


Recommended Posts

I was diagnosed with POTS over 4 years ago (I've had symptoms for about 30 years but was always misdiagnosed).  I'm not on any medication for POTS as I've not been able to tolerate anything.  In the last 6 months as well as the POTS tachycardia, I have also developed increasingly worse bradycardia in the afternoon, evening and at night.  My GP arranged a Holter to see what was going on and I got the results today - my HR ranged between 37 - 153 with episodes of sinus tachycardia and sinus bradycardia but no arrhythmia. 

My HR follows a fairly predictable pattern - when I get out of bed my resting HR is around 60 and when I stand for around 5 minutes it will more than double to 140+ BPM.  It continues this way until late afternoon when my resting HR drops to low 50s - it often picks up again around dinner time but by 7pm it starts to drop into the low 50s again, by 9pm it is mid to high 40s and by 11pm it is low 40s/high 30s.  It stays this way during the night until it begins to rise around 6am although during the night I get sudden bursts of increased HR every couple of hours where I wake up gasping and my heart racing.   I am still POTSy during the bradycardia - if I stand up my HR increases by more than 30 BPM.

I am symptomatic from about 52BPM - I am short of breath, very fatigued, mentally not with it, mild chest pain, dizzy and when my HR is low 30s I feel very unwell and like I am going to pass out.  In general, my levels of stamina and ability to do things has dramatically declined from this time last year - I can no longer do anything in the evening like go out for a meal or do crafty stuff or phone a friend and even when I'm not bradycardic I am still much more fatigued than in the past. 

I am waiting for an appointment with my cardiologist but my GP has said that in another patient without POTS she would be expecting them to suggest a pacemaker.  Everything I have read suggests that pacemakers aren't generally recommended for POTS but is that just in relation to controlling the tachycardia?  Has anyone got one for bradycardia?  If so how old are you (I'm 42) and did it help?  What effect did it have on your tachycardia?

Link to post
Share on other sites
12 hours ago, cmep37 said:

Everything I have read suggests that pacemakers aren't generally recommended for POTS but is that just in relation to controlling the tachycardia? 

Dear @cmep37 - yes, a pacemaker is not generally recommended for POTS but if your HR drops and stays that low AND you are symptomatic when it drops I think a pacemaker could very well help you. It would not help with the POTS but it would help with the bradycardia episodes. I agree with your GP that with any person with drops of HR like that it would be appropriate to consider a pacemaker. Anytime you have significant symptoms from prolonged ( and in your case recurring ) bradycardia a person should benefit from pacemaker insertion b/c it would help for the symptoms you describe, chest pain, dizziness, feeling like passing out.

Here is an article that discusses indications for pacemaker considerations: 

https://www.ahajournals.org/doi/full/10.1161/01.cir.97.13.1325

Here are some exerpts from that article: 

"The term “symptomatic bradycardia” is used frequently throughout the guidelines and is defined as a documented bradyarrhythmia that is directly responsible for the development of frank syncope or near-syncope, transient dizziness or light-headedness, and confusional states resulting from cerebral hypoperfusion attributable to slow heart rate. Fatigue, exercise intolerance, and frank congestive heart failure may also result from bradycardia. These symptoms may occur at rest or with exertion. Definite correlation of symptoms with a bradyarrhythmia is a requirement to fulfill the criteria of symptomatic bradycardia. Caution should be exercised not to confuse physiological sinus bradycardia (as occurs in highly trained athletes) with pathological bradyarrhythmias."

 

Class I: Conditions for which there is evidence and/or general agreement that a given procedure or treatment is beneficial, useful, and effective.

Class II: Conditions for which there is conflicting evidence and/or a divergence of opinion about the usefulness/efficacy of a procedure or treatment.

Class IIa: Weight of evidence/opinion is in favor of usefulness/efficacy.

Class IIb: Usefulness/efficacy is less well established by evidence/opinion.

Class III: Conditions for which there is evidence and/or general agreement that a procedure/treatment is not useful/effective and in some cases may be harmful.

Link to post
Share on other sites

Thanks very much @Pistol.  I just spoke to my cardiologist's secretary who has told me he's looked at the Holter results but doesn't think they merit an urgent appointment.  I asked her what would and apparently it's got to be life threatening which I agree my bradycardia isn't.  It is having a really detrimental effect on my health and quality of life though but that doesn't seem to matter.  His secretary was blaming coronavirus for the long waiting lists (my usual routine appointment which should have happened this summer is now unlikely to take place until 2022 at the earliest)  Of course he's still seeing private patients!  I'm not sure it's worth paying £200 to see him though as if he doesn't consider my case urgent he's unlikely to do anything to help me, just reassure me that the bradycardia won't kill me which I already know!  My money might be better spent seeing a different consultant - I need to find one that does web or telephone consultations!

Link to post
Share on other sites
On 9/7/2020 at 6:06 AM, cmep37 said:

Has anyone got one for bradycardia?  If so how old are you (I'm 42) and did it help?  What effect did it have on your tachycardia?

I got a pacemaker for brady-tachy  or sick sinus syndrome. I don't have POTS but rather neurally mediated hypotension, though I was getting both bradycardia and tachycardia and also pauses--which are very unnerving. The newest pacemakers have sophisticated algorithms and mine will try to outpace the premature atrial beats that can lead to arrhythmias and tachycardia. Since getting a pacemaker (2 years ago) I have not had any tachycardia and needless to say, no bradycardia! No idea how a classic POTS patient's tachy would respond but for me, no more tachy, just a steady 70 beats per minute (we experimented with different base rates and 70 feels best for me in relation to OI). 

Pacemaker implantation, while not a serious or dangerous procedure, is something for you and your cardiologist to weigh carefully. It is minor surgery and takes about 6 weeks to be able to move freely without restrictions. For me, it was marvellous--you are awake but slightly sedated during the procedure and as soon as she connected the leads to the pacemaker it was such a relief--no more, thumps, bumps and pauses. 

Link to post
Share on other sites

I've never posted here (long time lurker), so bare with me.

I have POTS (among other types of dysautonomia) and used to have bad episodes of bradycardia that landed me in the hospital.  My lowest sustained HR on record was 23 bpm.  No explanation for why my heart rate would go so low.  I didn't have bradycardia regularly, but when my HR got so low it was symptomatic, I was out of commission for a week or so and passed out nearly every time I even thought about standing or sitting up.  The last time I went to the hospital, the doctors offered a pacemaker the next day, which surprised me!  I'm only 36 and had never heard of a pacemaker with no diagnosed reason for bradycardia (as you know, it's not usually a POTS thing).  Anyway, the procedure was straight forward and they sent me home the following day.  Recovery was not bad; luckily I have kids who could lift anything over ten pounds for me when my husband was at work and there weren't really any other restrictions other than not moving my left arm in certain positions.  The only issue I had was my cat wanting to walk across the incision and my toddler aged niece head butting me in the area when she came to visit.  

My pacemaker has a closed loop system, and from what I understand, it can sense changes in the heart that usually occur just before certain types of syncope and works to sooth the heart.  As a result, I pass out way less frequently, though I do still black out a lot.  I still get tachycardia and other symptoms from POTS daily, but have not had to go to the hospital since my pacemaker was implanted last November.  I'm certainly not "cured" by any means, and I still have no answer to why my heart rate got so low.  Now may heart rate stays above 60 and my pacemaker is actively regulating my heart about 50% of the time.  If your doctor does agree with implanting a pacemaker, ask about a closed loop system as I think that's what has made a difference for me.

Link to post
Share on other sites

Thank you everyone for taking the time to reply!  @Sushi and @Krista I am really glad to hear your pacemakers have helped you.  It is nice to not feel quite so alone - when you say you have POTS and bradycardia most people assume you meant to say tachycardia!

I still need to do a lot more research into dysautonomia consultants and pacemakers but of course I'm still in a flare so I've no spare energy at the minute!  As my GP is forever reminding me having a chronic illness is a marathon, not a sprint so I just need to sit tight for a bit and wait until my autonomic system calms down a little before getting stuck in! 

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...