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[Always_anastasia]

I'm extremely happy to have found this site, I've been lurking for a few days ..and finally decided to join . 

 

I have not been diagnosed with dysautonomia , and with the Drs I have..I don't know if I will any time soon. 

 

I'm scheduled to wear a holter monitor ..I don't know if it will actually show anything .. lately I've been feeling super fatigued, and my heart has been racing. Of course when the Dr listens to my heart absolutely nothing is going on , normally I would be pissed.. but I expected them to say exactly that. 

 

 

Recently after I eat a meal , I feel exhausted and blackout/ sleep for 15 minutes after a meal and wake up to my heart beating like crazy. 

In the shower my heart beats like crazy, feels like I'm running a marathon and I'm only trying to shower ..I get dizzy, and extremely frustrated because my body hates cold water ..if I bend down I get dizzy, if I get up to fast I get dizzy. 

 

Last weekend I was short of breath my heart felt like it stopped and I passed out ..other people witnessed this event ,but of course when I go to the Dr ... everything sounds and looks wonderful. 

 

Do EKGs actually show anything ? 

 

If they did what was your next step?

 

And if it didn't ,what test did you do next ? 

 

I've been passing out since I was 9 years old and Drs keep looking at me like Im stupid .anyways sorry for the long rant , and I hope I posted this on the correct forum. 

 

I look forward to reading your replys 

 

Thank you . 

[Pistol]

@Always_anastasia welcome to this forum! I have POTS and VVS, so I can relate to your symptoms.  Here are 2 links from our website that may be interesting to you:

I started passing out at work with fast HR and was first diagnosed with VVS ( NCS ) after a positive TTT and later was diagnosed with hyperadrenergic POTS by my autonomic specialist. Many cardiologists and EPs now know about POTS, at least they should in the bigger hospitals.  A monitor shows if your HR speeds up, slows down or if you have arrhythmias, so it is good that you have one. Make sure you document your activity when you feel your HR speed up so your interpreting physician can see if it speeds up with activity only or when you are inactive. An EKG on the other hand shows your rhythm AT THAT MOMENT only but can also give clues as to whether there are any abnormalities with the heart itself. Most dysautonomia patients have normal EKG's. After that most doctors order a Tilt table test which may show an abnormal increase in HR upon standing, which is a criteria for POTS, and a increase in HR/ BP followed by a sudden drop leading to syncope is a criteria for VVS. Many doctors are not too concerned about syncopal episodes as long as there are no arrhythmias on the monitors, however - VVS and POTS both can cause your symptoms and can be improved with medications. What helps many people with frequent passing out spells is increase in fluid intake, increase in salt intake, compression stockings ( very important, you can get them at any medical supply store ) and if needed prescriptions such as Betablockers or other medications deemed appropriate by your physicians, depending on what your tests show. 

Let us know what your doc says after your monitor. Good luck!!!!

[Sushi]

14 hours ago, Always_anastasia said:

I'm scheduled to wear a holter monitor

How long will you be wearing the monitor? The trick is to catch an episode on the monitor—then your doctor (are they an electrophysiologist?) can see what it is. And yes, an ECG an show a lot. I have a tiny ECG device (a Kardia) that I always have with me so that I can record anything weird and email it to my EP.

14 hours ago, Always_anastasia said:

Last weekend I was short of breath my heart felt like it stopped and I passed out

This is the sort of thing it is great to catch but of course it may not happen again during your time on the monitor. There are many things that could cause this though one I hadn’t known about was a “pause” of a few seconds. The first time I noticed one it really was frightening. I was wearing a Polar HR monitor at the time and it clearly showed something happening but I didn’t know what it was until it was caught on a monitor. When my EP “caught” she treated it appropriately and it was a huge relief.

And, as @Pistol said, the next test would often be a TTT which can also give a lot of important information. Sometimes, if the monitor points to it, an echocardiogram may be ordered. It sounds like you have taken good steps and hopefully you will have a much better understanding of what is happening. Best wishes—the uncertainty and fear that can accompany these symptoms are difficult.

[Always_anastasia]

On 12/28/2019 at 9:51 AM, Sushi said:

How long will you be wearing the monitor? The trick is to catch an episode on the monitor—then your doctor (are they an electrophysiologist?) can see what it is. And yes, an ECG an show a lot. I have a tiny ECG device (a Kardia) that I always have with me so that I can record anything weird and email it to my EP.

This is the sort of thing it is great to catch but of course it may not happen again during your time on the monitor. There are many things that could cause this though one I hadn’t known about was a “pause” of a few seconds. The first time I noticed one it really was frightening. I was wearing a Polar HR monitor at the time and it clearly showed something happening but I didn’t know what it was until it was caught on a monitor. When my EP “caught” she treated it appropriately and it was a huge relief.

And, as @Pistol said, the next test would often be a TTT which can also give a lot of important information. Sometimes, if the monitor points to it, an echocardiogram may be ordered. It sounds like you have taken good steps and hopefully you will have a much better understanding of what is happening. Best wishes—the uncertainty and fear that can accompany these symptoms are difficult.

Thank you for your reply,

 

They say three days is the longest I can wear the monitor ...I don't know if this is true or not , but i just get the feeling nothing will happen in that time span.  I believe the test will be read by cardiologist , as they are the ones who ordered it...but my concern is that none of them specialize in dysautonomia, LOL they probably don't even know what it is . 

Right now , I'm not symptomatic..and I actually feel great these past few days ...is it wrong of me to hope I start feeling symptomatic soon ? 

I'm dealing with Kaiser Permanente doctors , and I really hate them..at least the ones I deal with lol 

 

 

 

[Always_anastasia]

Thank you so much for the response as well as the article recommendations! I will definitely take time and read them .

 

More importantly thank you for reminding me to document my heart activity ! I totally just would have been wearing the heart monitor and simply hoping it would catch something.. I will definitely take this approach and document everything from here on out.