Fainting/Erratic HeartRate

[redpenny11]

Hi All! I joined the forum 10 or so years ago after being diagnosed with POTS/NCS. I have not posted before but gained a lot of knowledge from frequent check ins. I have been well for many years after the initial 2 yrs of being home bound . About a year ago I began having shortness of breath that did not seem to correspond with bp/hr. All tests came back normal(lung, heart etc) and I was told anxiety. 2 weeks ago I began feeling off so checked vitals and noticed resting heart rate was quite low running in low 40s in the evening but 50s during the day sitting. I experience an increase in heartrate standing but not sustained and not like when I was first diagnosed. I restarted Fludrocortisone last year as my dr thought it may help with sob (it didn’t) heartrate seems to bounce up and down with movement, standing , talking etc. ( I am dizzy , nauseous and generally feel sick at this point ) New Ekg was abnormal but they questioned accuracy  and Echo showed moderate mitral valve regurgitation.  I started experiencing near syncope last week again sitting/standing and last night during sleep . I’m waiting on a cardio referral now. Does any of this sound Dysautonomia related or has anyone experienced this? It’s really scary because I have been well for many years (I am now 46, 35 at time of diagnosis )

Thanks for reading 🙏

[Pistol]

@redpenny11  shortness of breath is a symptom of POTS as well as NCS ( I have both ). But I would request a heart monitor at the cardiologists. The symptoms you describe could be due to bradycardia, and you report a low HR. At this point I would want to rule out a cardiac cause OTHER than dysautonomia. I think a cardiology referral is the right next step to take. Please keep us posted!

[redpenny11]

Thank you so much, will do.

[Sushi]

6 hours ago, redpenny11 said:

Echo showed moderate mitral valve regurgitation

You might want to get a second opinion on the level of mitral valve regurgitation as there is a level of interpretation involved. I had an echo that showed severe regurgitation but when read by another cardiologist, it was deemed moderate regurgitation. A third cardiologist thought it was severe and I did have a repair with a MitraClip. This definitely improved my symptoms and function. 

[redpenny11]

Yes I did read that about Echos. I most definitely will look into a second opinion.  Still presently waiting for the first cardio to schedule me, everything is in such slow motion. I wondered if the bradycardia is only at rest could that be from the valve?  I have had the shortness of breath intermittently for a year and last years Echo was mild( unless it was misread also) the only new symptom is the reoccurrence of near syncope after being faint free for years.

[JennKay]

@redpenny11 -- I agree with the others, this all sounds related to dysautonomia. It also sounds like your parasympathetic system is dominant, like you are having vasovagal symptoms. Are you taking a beta blocker? When I was taking metoprolol (for ectopic beats and adrenaline surges) and also when I switched to atenolol, I had symptoms like the ones you mentioned, except I never fainted or was near fainting. But, I may have never reached that point b/c I was always on the sofa and couldn't stand for more than a few minutes!! When I finally found a cardiologist more familiar with POTS/dysautonomia she advised me to stop all beta blockers b/c she believed they were causing or amplifying most of my symptoms (chest tightness, lightheadedness, nausea, loss of appetite, bradycardia, difficulty breathing). I stopped per her advice and the majority of my symptoms have improved significantly with increased fluids, compression tights, and daily walking. I still struggle with ectopic beats and orthostatic symptoms, especially with hormonal changes, so I take a ridiculously small dose of atenolol as needed. I'm actually dealing with an increase in PAC frequency lately. In the past, I teneded to notice more PVCs. The PACs are still annoying, but they are less startling than the PVCs so I'm trying to remind myself not to complain!!

[redpenny11]

I don’t take anything outside of the Fludrocortisone .5 so pretty low dose. I was thinking the same about parasympathetic .(or sympathetic withdrawal) the nausea comes on suddenly and I can get adrenaline at the same time along with panic anxiety. Everything is out of whack no matter if my vitals are in a normal range. Evenings and nights seem to be worse.  
I was able to get into a cardio next week to look further into my Echo and hopefully a Holter. Trying a chiropractor  tomorrow for the neck/head pain. Wondering if I have cranial instability driving this or blocking signals to vagus nerve. This flare started one day after a massage to my neck/shoulder for pain . Palpitations at night as well which I haven’t really had before. Dizzy standing but sometimes laying down too. So a plethora of symptoms in all my systems . It feels like you just can’t make it through all the dysfunction but I did once before so trying to stay hopeful .