Dysautonomia and Heart Concerns

[Kyser420]

I am 29 years old. And I was experiencing weird flip-flop sensations in my chest near the end of last year. The episodes got quite strong; and I ended up going to the ER because I had no idea what was happening. Turns out I was having PVCs. I followed up with a cardiologist then, who did some testing and diagnosed me with neurocardiogentic syncope. Which he said is a type of dysautonomia. I knew nothing about this issue, never passed out or ever felt like I was going to up till that point. My PVCs eventually went away, so I just continued with life as usual.
 

Fast forward to a couple months later, and I start having new symptoms. I would feel lightheaded, especially if I sat down too long at work. My heart would randomly start racing. Sometimes doing nothing, but more often when I would stand up or start moving around. Instead of a normal small increase, I would have a 30-40 bpm increase. It wasn’t uncommon for my heart rate to be at 150 just walking around doing normal stuff. It made me feel terrible. Out of breath. I often times just sat on the couch to avoid the racing heart. Then my PVCs returned.
 

I saw a new cardiologist who put me on a beta blocker and it really helped me. I was able to actually do the stuff I was able to do before all this started happening to me. I also wear compression socks daily, and drink a lot of water. These things have all helped. But I still have weird symptoms sometimes. I can hardly lie flat to sleep anymore because my heart just pounds. I can hear my heartbeat in my ear and feel it in my neck. Sitting up to sleep helps this. My heart doesn’t race anymore like it did before, but the beta blocker occasionally makes my heart rate go down to about 55 at rest. Makes me nervous. My PVCs have sort of stopped again; but I get one if I take a deep breath. Or I will still have a day or so where I will have tons of them. 

I guess I’m hoping to find out if these things can be normal? I’m almost convinced there is something else causing these symptoms or causing the dysautonomia. The doctors don’t think so, but I wonder sometimes. Does anyone else have a pounding heart? Or find lying flat to be difficult? 

[Sushi]

2 hours ago, Kyser420 said:

Does anyone else have a pounding heart? Or find lying flat to be difficult? 

I’d bet that a lot of us do—I certainly used to until I had effective treatment. I also have the diagnosis of neurocardiogentic syncope, though there are various terms for what is basically the same condition. Have you considered seeing a doctor who specializes in Dysautonomia? Most cardiologists are not experts in it, though Electrophysiologists often know more about it than general cardiologists as they specialize in heart rhythms. Did your cardiologist evaluate you for POTS? Unfortunately the symptoms you describe are typical of Dysautonomia and all of us here are working with our docs to find answers and effective treatments. So you are in the right place though I wish that we could offer more solutions.

[Kyser420]

My cardiologist did a stress test, tilt table, ultrasound of my heart and a holter monitor. Unfortunately all of this was back when I was just having PVCs, no other symptoms. I almost passed out in recovery of the stress test (HR and BP both tanked), so that prompted the tilt table. Ten minutes into the tilt table and the same thing happened, BP and HR tanked. Which lead him to the diagnosis he gave me. I feel like a lot of my symptoms changed (no heart racing at that time) since those test, and I tend to lean more towards POTS symptoms now.

I asked my GP if I could be referred to an electrophysiologist, she said no, my cardiologist should be able to treat my symptoms…. I know there are specialty clinics for dysautonomia that have really long wait lists for appointments…. Would that be something worth setting up and waiting for? Thanks 

[Macho319]

Hello there! I’m sorry you’re going through so much. I’ve been there too. Being persistent has helped me along my journey. Ask your GP why they are saying no when an EP or a different specialist can assist you more. Don’t take no for an answer. If your GP continues to say no, find another one. Keep banging on doors until you either find answers or get peace of mind. No one but you knows how you’re feeling or what you’re going through. I wish you well in your quest. Take care! 

[Pistol]

8 hours ago, Kyser420 said:

I know there are specialty clinics for dysautonomia that have really long wait lists for appointments…. Would that be something worth setting up and waiting for? Thanks 

Hi - yes, I had to see 4 cardiologists and was not properly diagnosed until I saw an autonomic specialist. I too have NCS, as well as POTS. My first TTT showed NCS, my second was interpreted as normal but later the specialist said it was clearly positive for POTS. 

All of your symptoms are very familiar to me, and as others already said - they sound pretty typical for dysautonomia. Since There are changes from your last TTT I would ask for a repeat TTT to check for POTS. 

You are doing a good job taking care of yourself, by doing all of the recommended treatments and educating yourself about your condition. I am glad the beta blocker helps. I would not worry about a HR in the 50s, that is common with beta blockers, it happened to me in the beginning too.. Best of luck, keep us posted! 

[Sarah Tee]

Is the new cardiologist unwilling to help with your changed symptoms? Or did you just not want to go back to them? (We’ve all had that experience!)

In most countries you have a right to ask for a second opinion. Perhaps if you phrase it to your GP that way it will help. And maybe take a support person with you. You don’t have to say anything against the cardiologist. Getting a second opinion is a good idea any time you feel unsure.

Facebook groups can be a good way to find autonomic specialists in your area (or at least nearby).

Even if there is a long wait time, it’s good to get your name down on the list. Sometimes people get in sooner when there are cancellations.

[Kyser420]

The first cardiologist that completed my testing, I did not care for. He did not explain anything to me, and did not even tell me what he officially diagnosed me with, just told me it was a type of dysautonomia. After my tilt table test, he said the test was over, he was prescribing me a medication called midodrine and I was to take it three times a day, drink a lot of water and eat a lot of salt, then he left the test room. I had to look at the test notes on my online health portal to see what the official diagnosis was. Then I did a bunch of research on the topic on my own. I definitely don’t want to go back to him.
 

When the new symptoms started getting worse, that’s when I went to the second cardiologist for a “second opinion”. He was a lot more open to talking about, and educating me on my diagnosis. He is also the one that said I don’t need the Midodrine, especially since I was having a lot of terrible side effects from it, but prescribed a beta blocker instead. He told me he would agree with the first cardiologist on the diagnosis given to me. He also said he thinks a lot of dysautonomia patients get better or even recover completely, with therapies such as: compression socks, water, salt, and exercise. 
 

I have concerns that there is an underlying condition that is causing my dysautonomia. Such as an autoimmune disease perhaps. I did ask the second cardiologist about this, and he said it’s possible. But yet neither of the cardiologist I’ve seen have been concerned about my symptoms. It’s almost as if they believe 1. dysautonomia isn’t disruptive, 2. there can’t be an underlying cause possibility, and 3. I’m young so there should be no more testing done because statistically I will be okay. 

I guess I have not been to many different doctors at this point, but I already feel overwhelmed by finding a doctor, going to the appointment and then not really getting anywhere with it. The beta blocker medication has probably been the biggest game changer. But I would like to dig deeper and figure out some causes if possible. Or figure out if I just have this and that’s that.
 

I don’t really want to start down the rabbit trail of going to doctor after doctor, only because I feel like they start to label you with anxiety after awhile. Then they really don’t take you seriously. I will look into getting an appointment with a dysautonomia specialist. Even if it’s a long wait, it’s likely to yield the most help. I appreciate all the thoughts and help, honestly it helps to just know I’m not alone and it’s frustrating for others too. 

[Sarah Tee]

@Kyser420, I’m sorry the new cardiologist didn’t seem concerned about your quality of life. However, perhaps you could go back to him for medication and treatment adjustments while you are waiting to see an autonomic specialist.

I know it’s not ideal, but given that many cardiologists haven’t heard of dysautonomia, have heard of it but think it’s not real (!), or want to write off patients with anxiety, he doesn’t sound too terrible.

He may be able to try you on another medication. Many people need two in combination. If you have signs of low blood volume, for instance, he could add fludrocortisone (if that’s used in NCS). It’s definitely used in POTS.

 

There’s research going on into auto-immune and auto-inflammatory causes for dysautonomia (mostly looking at POTS). I think autonomic specialists would agree that there is an AI cause for some cases.

Unfortunately, at the moment, this only has relevance for people who are sick enough (with very marked AI indicators) to be seen at one of the big centres. For the average patient and specialist, there’s no clinical application of this knowledge yet.

There is a trial happening looking at IVIg for POTS, but even if this proves successful, again it will only mean treatment for very sick people with marked AI indicators.

I’ve recently looked into all this, so sorry for the essay. It’s all very early stages, unfortunately.

 

One other avenue is if you show signs of an auto-immune condition that is commonly co-morbid with POTS (and adjacent disorders). If you can get diagnosed with a specific AI condition, then receive immune modulating or suppressing treatment, it may improve your autonomic symptoms as well. There are treatments for most of these AI disorders. Not to say it’s plain sailing, but at least there may be a medication or two to try.

I personally suspect I have Sjogren’s syndrome due to family history, but it’s taking its sweet time to show up. So what I can do at the moment is try dysautonomia treatments and watch for any new symptoms.

On the plus side, there are a lot of dysautonomia treatments to try.