Fernfairy Posted June 2, 2023 Report Share Posted June 2, 2023 I was recently diagnosed with autonomic dysfunction as a comorbidity to Ehlers-Danlos at 45. I’ve had symptoms of both for as long as I can remember but no one figured it out until recently. I was told by my cardiologist that because my autonomic dysfunction had gone on for so long without treatment I was now in beginning stage heart failure. My blood pressure has always been low but I’ve been experiencing significant orthostatic hypotension which is made much worse by the heart failure drug they put me on. I also have a resting heart rate around 50-55, which dropped down in the 40s with the med, although it does shoot up when I stand up. They put me on a very low dose of Entresto, but it lowered my blood pressure and heart rate too much and they had me stop until I can check in with the cardio next week. I’m just wondering if anyone has had a similar experience and found treatment that worked for them and were able to improve ejection fraction numbers and autonomic dysfunction? The cardio said that it’s possible if we get the autonomic dysfunction under control with some lifestyle changes in combination with medical therapy for the heart failure my heart may improve, but it seems like treatment options may be limited by my low blood pressure issue. Thank for any input! Quote Link to comment Share on other sites More sharing options...
Jyoti Posted June 3, 2023 Report Share Posted June 3, 2023 I don't have a similar experience, but I was moved, reading about yours. How utterly rotten! It sounds like your cardiologist is really on this and will try to get the dysautonomia controlled. I wish you the very best and ...that you will hear from some others here who might have specific advice or experience to relate. Quote Link to comment Share on other sites More sharing options...
Fernfairy Posted June 3, 2023 Author Report Share Posted June 3, 2023 Thank you Jyoti, I appreciate it! Quote Link to comment Share on other sites More sharing options...
Sushi Posted June 3, 2023 Report Share Posted June 3, 2023 23 hours ago, Fernfairy said: I was told by my cardiologist that because my autonomic dysfunction had gone on for so long without treatment I was now in beginning stage heart failure. My blood pressure has always been low but I’ve been experiencing significant orthostatic hypotension which is made much worse by the heart failure drug they put me on. I also have a resting heart rate around 50-55, which dropped down in the 40s with the med, although it does shoot up when I stand up. They put me on a very low dose of Entresto, but it lowered my blood pressure and heart rate too much and they had me stop until I can check in with the cardio next week. I have some of the same problems with EDS, orthostatic hypotension, and I had bradycardia. Are they diagnosing beginning stages of heart failure due to a low ejection fraction and bradycardia? I got a pacemaker a few years ago which deals with the bradycardia but the orthostatic hypertension remained a problem. I find that knee-high or higher compression garments are an absolute must as is hydration with electrolytes and LOTS of salt. I also developed Afib and recently had an extensive ablation where they also ablated the autonomic ganglia in the heart and this has about tripled my ability to stand up without presyncope. Are you seeing a general cardiologist or an electropysiologist? A consult with a good electropysiologist might give you some new perspectives as heart rate and rhythm are their specialties and some of them actually treat Dysautonomia. Very best wishes. Quote Link to comment Share on other sites More sharing options...
Fernfairy Posted June 4, 2023 Author Report Share Posted June 4, 2023 Hi Sushi. You’re the first person I’ve found with a similar situation - thank you for sharing your experience and suggestions! I was diagnosed after an echo with low ejection fraction and orthostatic hypotension via a tilt table test, and also paroxysmal tachycardia - but I’m not even sure exactly what that means yet. I‘m pretty scared about the heart failure issue and am feeling overwhelmed by all of it. I’m in Alaska so I feel lucky to have found a cardiologist who specializes in autonomic dysfunction but I’ve already been thinking that a second opinion out of state would probably be a good idea so I’ll look for an electrophysiologist. Thanks again! Quote Link to comment Share on other sites More sharing options...
Fernfairy Posted June 4, 2023 Author Report Share Posted June 4, 2023 11 hours ago, Sushi said: I have some of the same problems with EDS, orthostatic hypotension, and I had bradycardia. Are they diagnosing beginning stages of heart failure due to a low ejection fraction and bradycardia? I got a pacemaker a few years ago which deals with the bradycardia but the orthostatic hypertension remained a problem. I find that knee-high or higher compression garments are an absolute must as is hydration with electrolytes and LOTS of salt. I also developed Afib and recently had an extensive ablation where they also ablated the autonomic ganglia in the heart and this has about tripled my ability to stand up without presyncope. Are you seeing a general cardiologist or an electropysiologist? A consult with a good electropysiologist might give you some new perspectives as heart rate and rhythm are their specialties and some of them actually treat Dysautonomia. Very best wishes. Ahh..after replying to you separately I just figured out that the quote button lets you directly reply to a comment. Quote Link to comment Share on other sites More sharing options...
Sushi Posted June 4, 2023 Report Share Posted June 4, 2023 9 hours ago, Fernfairy said: Hi Sushi. You’re the first person I’ve found with a similar situation - thank you for sharing your experience and suggestions! I was diagnosed after an echo with low ejection fraction and orthostatic hypotension via a tilt table test, and also paroxysmal tachycardia - but I’m not even sure exactly what that means yet. I‘m pretty scared about the heart failure issue and am feeling overwhelmed by all of it. I’m in Alaska so I feel lucky to have found a cardiologist who specializes in autonomic dysfunction but I’ve already been thinking that a second opinion out of state would probably be a good idea so I’ll look for an electrophysiologist. Thanks again! Hi again, Paroxysmal tachycardia means that it comes and goes. If you have had a tilt table test I guess they would have ruled out POTS which is tachycardia while standing or being upright. Has your cardiologist mentioned the possibility of sick sinus syndrome? That is characterized by having bradycardia sometimes and tachycardia sometimes. That is why I was given a pacemaker. Very good that you have a cardiologist who specializes in autonomic dysfunction but with the added question of heart failure, a second opinion sounds like an excellent idea. Also, “heart failure” can improve and/or disappear with the right treatment so learning more would be to your advantage. Quote Link to comment Share on other sites More sharing options...
MikeO Posted June 4, 2023 Report Share Posted June 4, 2023 41 minutes ago, Sushi said: Also, “heart failure” can improve and/or disappear with the right treatment so learning more would be to your advantage. Been here and still am. Whole reason for my med changes. Couple of years ago i posted some sudden weight gain and again this summer i am back at it after being fairly stable. not sure what changed but going from 178 to 185 overnight i do feel. For now Cardiology has me logging weights. only other note on my side is i am bloated again and my fasting BG's have been in the 130-140's. Slow stomach emptying? I have reached out to my PCP for a referral to Gastro and see what we get. Just posting what i have been seeing. Quote Link to comment Share on other sites More sharing options...
Fernfairy Posted June 4, 2023 Author Report Share Posted June 4, 2023 2 hours ago, Sushi said: Hi again, Paroxysmal tachycardia means that it comes and goes. If you have had a tilt table test I guess they would have ruled out POTS which is tachycardia while standing or being upright. Has your cardiologist mentioned the possibility of sick sinus syndrome? That is characterized by having bradycardia sometimes and tachycardia sometimes. That is why I was given a pacemaker. Very good that you have a cardiologist who specializes in autonomic dysfunction but with the added question of heart failure, a second opinion sounds like an excellent idea. Also, “heart failure” can improve and/or disappear with the right treatment so learning more would be to your advantage. You are helping me come up with great questions for my next appointment. My heart rate does go up when I stand greater than 40 beats, but it’s inconsistent when I’m up it bounces around. I also thought that to be diagnosed with POTS there had to be no orthostatic hypotension? Can you have both? Quote Link to comment Share on other sites More sharing options...
Pistol Posted June 5, 2023 Report Share Posted June 5, 2023 @Fernfairy currently the criteria for POTS is an HR increase without a drop in BP. Even healthy people experience drops in BP, which the ANS compensates for by increasing the HR in order to ensure that all organs are properly circulated. But a person with POTS can also experience drops in BP, just not every time, and the HR would have to elevate even when the BP is normal. I know, it gets confusing! Quote Link to comment Share on other sites More sharing options...
Sushi Posted June 5, 2023 Report Share Posted June 5, 2023 22 hours ago, Fernfairy said: My heart rate does go up when I stand greater than 40 beats, but it’s inconsistent when I’m up it bounces around. This does sound like an area where an electrophysiologist might have some helpful input. When you say "bounces around," is it a regular rhythm or an irregular one? (like an arrhythmia?) You can usually feel an irregular rhythm by simply holding your fingers on the pulse in your wrist. Quote Link to comment Share on other sites More sharing options...
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