Cardiology appointment and increased atrial pressure

[targs66]

Apologies in advance for this long post: I am feeling worried and was hoping to get some feedback on the following!

I have been feeling absolutely wrecked all fall: more fatigued than usual, and consistently extremely low BP. I used to "perk up" a bit in the early evening, with BP readings around 96/65, but lately I seem to be in the mid-80s/mid-50s.  In addition, I've had several episodes where I am especially dizzy and weak, and I feel like I am "lurching" even if I am sitting still - like a sudden tipping feeling even though I haven't moved. 

I went to the cardiologist today just for a long-overdue followup to an echocardiogram that he ordered, and he pointed out that my last two echocardiograms (taken just over a year apart) both show increased atrial pressure in my heart. It's not consistent: one (two years ago) showed increased RIGHT atrial pressure (11-20 mmHg), with left atrial pressure at 8-12 mmHg, and the more recent echo (about 6 months ago) showed increased LEFT atrial pressure (15-22 mmHg) and right atrial pressure at 6-10 mmHg.  However, this more recent echo report does say ""No evidence of pulmonary hypertension."  The cardiologist had ordered the echos because my EKGs always come back as abnormal, with a "low voltage" reading every time. 

The cardiologist said that the low voltage EKG suggests there is fluid on the heart, and that the atrial pressure might support that finding.  He did say that this might suggest that I have a "problem with the heart muscle," and when I pushed him to clarify, he said it could suggest "reduced diastolic function." However, he said he normally sees this with high BP readings, and that he would "have to read up on it" as he wasn't sure what these findings mean in light of my dysautonomia. (I'm actually v grateful to have a doctor who is willing to admit he doesn't know something!) He didn't seem overly concerned, and said he would see me again in 3-4 months.

Naturally, I came home and consulted Dr. Google, and feel a bit freaked out, because the "reduced diastolic function" seems to suggest a heart failure problem.  I'm wondering if people with dysautonomia tend to have increased atrial pressure, or if they are entirely unconnected? Is anyone familiar with increased atrial pressure?

Many thanks in advance!

[Pistol]

@targs66 - I am sorry to hear your having these abnormal findings. I can tell you that- according to what I have read and was told by my doctors -  normally people with dysautonomia have functionally sound hearts - usually nothing is found abnormal with the structure or functioning of the heart itself. However - this does not mean that the symptoms of dysautonomia cannot lead to problems with the heart and of course you can have heart muscle issues that are unrelated to dysautonomia. 

I am sorry that you have such horribly low BP - when mine goes below 90 I feel like a wet, wrung-out rag. Since you have low readings most of the time it has to be dreadful to deal with. Has your cardiologist ever suggested or tried meds that can increase BP? 

[lieze]

Targs66 I am sorry that you are going through this concerning event. I am feeling everything you describe. More fatigued the past several months. I also feel the moving or lurching when I am sitting still. I get a lot of unpleasant symptoms when I get up. My pressures do spike up but I think it is because my body is in so much distress. But I still get lows. I’ve watched it because I wondered if I need a BP med but as low as I go with my limited knowledge it doesn’t seem safe to me. But like you often there were times of the day symptoms would ease and I could function a bit and now depending on how bad my symptoms are during that day sometimes I just feel unable or too bad to be on my feet. Or while doing an activity my heart struggles I get symptoms so I pretty much stop what I am doing. Happened last night when I was running the robot mop. I was trying to get certain areas that were more soiled and had bent down to pick it up and put it directly on an area. About that third or fourth dip my heart didn’t like what I was doing so I stayed put and still for a while before I even tried to get up and to recline again. 

I wish I could give you some sort of reassurance that everything is going to be okay. And that we are just in some kind of slump and will pull out of it. I care about what you are going through it hits so close to home and I am living a similar life where I am just sitting on the sidelines get horrible feelings in my chest or in my head. All types of sensations and I also get horrible anxiety. I go back and forth blaming the anxiety blaming different things to just not knowing what to think. 

If you would like a friend for support to get through this I am willing to try to help support you. I am a basket case myself and sometimes my anxiety is so bad I try to avoid new info all together or I wonder even if looking at my screen sets off my anxiety so I have to just sit and breathe and try to fight off anxiety or if I am getting my bizarre symptoms ride them out trying not to freak out which is not easy for me. 

These things are a challenge to get through no question. I hope that your doctor can find info that will be helpful and reassuring to you and that we can move on to better days.

I have always stressed or focused on how little function I have over the last ten years since I got this condition. I look back now and think wow I could really do a lot and just didn’t realize it. I guess I should just be thankful.

[targs66]

@Pistol - thanks for that info! I am just hoping that this is not some sort of heart issue. It’s enough dealing with the dysautonomia!

Yes, the low BP is just debilitating. I have tried a number of meds over the years (Florinef, Midodrine, Ritalin, Northera) to get the BP up, but have found that it’s like flogging a dead horse, if you’ll pardon the metaphor. These meds do indeed raise my BP for a bit, but I feel wired and tired, and inevitably crash very badly as they wear off. It’s just like drinking too much coffee and paying the price. 

So I have always done the “home remedy” approach instead, even though it’s sometimes not very effective: compression socks, lots of water, high salt intake. I am now wondering if the salt and fluids could have been the reason that these echos showed the increased atrial pressure, and whether I should reduce them!

[targs66]

@lieze - thanks for your kind words, and I am sorry that you are having such terrible anxiety issues! I agree, sometimes the anxiety is as bad or even worse than actual illness itself. I am feeling a bit calmer about it all today; I think this new possibility posed by the doc yesterday - a heart issue - was enough to set off terrible worry that my very limited level of functionality is just definitely destined to get worse. That may be true, of course — but in reality, it’s not definite; it’s not even a diagnosis yet, and I am confident that this particular doctor would have immediately taken action if it was necessary.  I know I am just wasting limited energy worrying about the what-ifs! (Can you tell that I am trying to give myself a pep talk??) I appreciate your offer of support and hope that I can offer some to you, too. Hang in there, and again, thank you for being there!

 

[Sushi]

On 11/27/2019 at 8:18 PM, targs66 said:

naturally, I came home and consulted Dr. Google, and feel a bit freaked out, because the "reduced diastolic function" seems to suggest a heart failure problem. 

Diastolic dysfunction is a common descriptive cardiac finding for dysautonomia patients—I also have it. I don’t think that it is a structural problem with the heart but rather dysfunction due to dysautonomia. Sorry, though I seem to live in cardiologist offices I don’t know what increased atrial pressure actually means—can you say more about it? 
Sorry you are having such a bad time!

[targs66]

@sushi - thanks for this; it is reassuring to think that it is a common finding for dysautonomia patients, as opposed to being caused by something more sinister.

To try to answer your question, I find it quite confusing - what I have read suggests that the heart is encountering some kind of resistance in its efforts to move the blood around (for example, a damaged mitral valve would create resistance). This resistance thus causes a sort of “logjam”, as the blood is not moving as it should, and that increases the pressure in the atrial chamber. I don’t know if the atrial pressure causes the diastolic dysfunction, or if it is the other way around - does the diastolic dysfunction lead to a reading of increased atrial pressure on an echocardiogram? To add to the confusion, my doc said that the radiologist must estimate the atrial pressure, as there’s not a precise way of measuring it, which suggests it’s a subjective number.

As I am sure you can tell, this is all new to me. I will post an update if I get some clarity on the above — and I certainly welcome any corrections! Thanks again for your comment.

[Miraclemaker11]

Hi again Targs66.  I’m so very sorry to hear that you are suffering in this way.  And yet you’ve been compassionate enough to respond to the thread about my son and his POTS.  It sounds like your heart might be functioning well enough (but it is so scary to not know for sure) but the autonomic cardiac components are not working right at all.  I see you’ve tried all of the key meds and natural remedies but with very little benefit.  Having said that, I saw where another person posting on DINET had success taking Midodrine 60mg per day and split it up by taking 2.5mg per hour to reduce the side effects.  I know that’s imperfect math there, but I wondered if that might help you instead?  I’m actually going to post this question to the board later today.  I truly hope you get some answers and relief.  

[targs66]

@Miraclemaker11 many thanks for your kind thoughts. I think you are right, and this is all part of the autonomic problem, as opposed to a true cardiac dysfunction. I’ll be glad to spend some more time with the cardiologist and get his thoughts.

That is a good tip re: Midodrine, thanks, and I think I have heard of some people who have had success on small doses! I personally did try taking very low doses of Midodrine after having difficulty tolerating a full dose. It does seem to have the desired effect briefly (an increase in BP, and more alertness) even at those low doses — but I still would “crash” within a few hours after taking it. Oddly enough, after the initial benefits wore off, my heart rate would become very slow (50s-60s BPM), which may explain the “crash” feeling.

I’ll be curious to see what other members have to say about it when you post the question to the board.

All the best to you and your son!

[Sushi]

@targs66 Yes, it is confusing! Though I have diastolic dysfunction, none of my echo reports say anything about atrial pressure—so I don’t know what it even means! Before I had my mitral valve repaired the echoes also did not mention anything about atrial pressure. Maybe you will need to get your cardiologist or EP to explain it in detail. Best wishes with this.

[targs66]

@Sushi  That is odd! In both echocardiogram reports (which were done at different places), the atrial pressure is described in a section titled “Hemodynamics” , and that section starts with “Doppler pattern suggests...” then it goes on to list the atrial pressures. 

I did notice that an echo report that I have from the UK didn’t list the atrial pressure. 

I will post an update when I find out more. 

Thanks for your input!