Anamaria

20 minutes ago, Don said:

Anamaria,

Likewise.  I don’t see my cardiologist until July 24th.  I actually see the PA.  She works for the EP.  But the day I see her the EP will be there as well so the three of us can talk.  I just want to know what’s going on.  Since I got my watch, I’ve seen my HR jump from 50-185-70 within a few minutes.  I’m not physically active.  My watch knows this.  My device is giving me good info.  I also have a pulse ox and good BP cuff with Bluetooth to my iPad/iPhone.  I can bring this to my doc.  

Don that’s really great! I’ve been contemplating getting an Iwatch but I have fear that it’ll make me more anxious. I have a pulse ox and a blood pressure cuff too but I feel the iwatch will just have me ALWAYS checking, ya know? 

4 hours ago, Don said:

I have something very similar to what is being described.  For about a year I have described sudden shortness of breath.  Almost like I’m panting.  It comes on very quickly but I’ve never been able to properly describe it to my doctors.  They have no answers.  Recently I got an Apple Watch.  A few days ago, I had an episode.  My breathing sped up very suddenly.  This time I was wearing my watch and it started alarming at me.  Within about 10 seconds, my HR went up from about 46 to over 150 with no physical exertion.  And my app caught it.  It took over half an hour to get down below 100bpm.  I called my doctor to tell them what happened.  My cardiologist wants to see me next week.  I had a halter monitor (24 hr) last year.  They want to repeat it for 2 weeks.  My neuro mentioned a loop recorder.  I’m going to ask about this.  My cardiologist said I could be having random occurrences of SVT or IST.  Doesn’t know.  If that’s the case, they mentioned being treated with Corlanor and a pacemaker....all this makes me a bit nervous.  

If it makes you feel any better I had a holter on during an episode my heart rate went to 43 then shot up to 160 my rthymn was ok though. My cardio EP told me this wasn’t dangerous at all. I have an appt with EP tomorrow and I’ll mention that it happened two days in a row. I get exactly what you described....I hate the feeling because it leaves me feeling anxious for hours afterwards because I think something bad is going to happen. Please keep us updated with what they find if they find anything pacemaker has been thrown around for me as well but I’m trying my best to avoid it. 

10 hours ago, Scout said:

Hi Anamaria, 

So sorry to hear you're experiencing this. It really is scary! 

I have this happen a lot, too. I will notice my HR being quite slow (I'd guess maybe 50bpm or less), and then suddenly it sky rockets and races, very fast, anywhere from 30 seconds, to hours. 

I am still not sure why this happens, but am trying to find out. My cardiologist keeps saying my heart is fine, so I am on a waitlist to see an autonomic specialist. But I think what happens is, because of the dysautonomia, sometimes when the HR goes low, the whole ANS goes into overdrive and over-compensates, if that makes sense? Our system likely notices a drop in BP, drop in HR, so assumes (because it is malfunctioning), that it needs to raise BP and raise HR, so tells the body to do this, and can release chemicals that cause that to happen.

It sure isn't fun. I hope you get some answers very soon! 
 

Oddly enough, my symptoms actually kind of leveled out for a few weeks. I was naive enough to think it was controlled or just disappeared all together. So these two episodes were even scarier because they literally came out of no where! 

10 hours ago, Scout said:

Hi Anamaria, 

So sorry to hear you're experiencing this. It really is scary! 

I have this happen a lot, too. I will notice my HR being quite slow (I'd guess maybe 50bpm or less), and then suddenly it sky rockets and races, very fast, anywhere from 30 seconds, to hours. 

I am still not sure why this happens, but am trying to find out. My cardiologist keeps saying my heart is fine, so I am on a waitlist to see an autonomic specialist. But I think what happens is, because of the dysautonomia, sometimes when the HR goes low, the whole ANS goes into overdrive and over-compensates, if that makes sense? Our system likely notices a drop in BP, drop in HR, so assumes (because it is malfunctioning), that it needs to raise BP and raise HR, so tells the body to do this, and can release chemicals that cause that to happen.

It sure isn't fun. I hope you get some answers very soon! 
 

I’m so sorry! The feeling itself is so scary and I literally have to talk myself out of rushing to the ER. I have had an extensive Cardio work up and they told me my heart was fine. The PA that I see at my EPs office is incredible and she recommended that I see a genetist because she feels like I have secondary POTS. I saw a genetist a few weeks ago and I’m going through the genetict testing process now. Hopefully they can figure this out soon. I’ll keep you updated if they find the cause of my heart doing that and if you find anything out on your end please let me know. 

First I’d like to point out that we have the same diagnosis! You’ve had your diagnosis longer than mine so I’d love to get to know some of your symptoms to see if any are similar and what you have found to help. I have eye issues as well and recently started seeing a neuro opthamologist. Have you seen one? 

I guess I forgot to mention that I use a pulse ox I didn’t check my blood pressure though a few months ago I felt something similar and I had my pulse ox with me it logged my HR at 43 but then it literally within seconds went up to 160 it recorded it on the holster monitor I was wearing at the time. It’s super scary in the moment and considering that I’m 32yo it’s even scarier! Hopefully my EP will have some insight on Monday. Thanks for answering! 

Yesterday at work I got an episode where I felt like I couldn’t catch my breath I literally felt my heart slowing down and then it went super high. I called 911 because I was so freaked out, I literally felt like I was going to die.  The nice EMT did an EKG and told me it looked normal so I opted out of going to the ER (I feel like I live there and they always tell me to follow up with me EP). The same type of thing happened today when I was laying in bed propped up watching a movie I can feel it coming on I feel really weird and then I feel my heart slow down drastically and then go super high. Anyone have this with POTS? Is this a common symptom? I have an appt with the EP on Monday so I’m trying to avoid the ER and just wait it out until then. 

Recently I’ve been offered to have an EP study done along with a sinus node ablation if they can find the issue during the EP study. I have POTS but I also have inappropriate Sinus Tachycardia and Bradycardia as well. Has anyone else been given this option? Did it work for you if you went through with having the procedure done? Any side effects? 

12 hours ago, Debbie Rose said:

My Brady was occurring before my POTS diagnosis (actually NCS) and that was part of why they had a hard time diagnosing. At rest I am 45-55, so my HR of 120 was HORRIBLE for me considering my resting, and my BP would drop too. It took a tilt table test to define it.  If I go from standing to lying flat my heart actually pauses and I briefly feel like I am passing out. But the body is a remarkable thing and has alot of "safety" built in. Not that I go from standing to lying abruptly at all, now that I experienced it, but sometimes I forget.  So I still have my symptoms, I am on midodrine now-which helps. Was on fludrocortisone but its effectiveness wore off. But beta blockers lower my BP (tried it decades ago for migraines) so I stay clear. I have clonazepam for anxiety/chest pain

I feel as though at this point I’m developing anxiety. I’m currently taking Propanolol for my high heart rates but I still have a few episodes of it getting into the 120s. The doctors seem to think that something else might be causing my POTS so my mind is always thinking of what it could be. My blood pressure fluctuates a lot from being a little high, to normal, to too low. I’ve learned this is a very difficult syndrome to manage.

15 hours ago, Steven said:

That's great that you'll soon have autonomic testing results from Vanderbilt. 

I live in Australia where there's nowhere like Vanderbilt or the Mayo Clinic - but I've been reading textbooks and articles, watching talks etc. from leading people at those places. I've already established that there's only limited testing available in my state, so I'm currently following up on an interstate referral, as well as a local cardiology referral (even if only for them to provide further official confirmation that my state can't offer testing that I need), while trying to establish who offers what where and how to access it. For the interstate referral, I got a letter last month informing me there's an expected wait time of approximately 9-12 months for an initial consultation to discuss arranging testing. My GP arranged the Holter monitor, but it seems it'll be another month or more before I actually get to speak to a cardiologist unless something in the Holter monitor results is considered to be urgent.

I'll share some details about my Holter results on here in the next week or two. The more people share details online the easier it will be for other people to get the info they want when they search for it.

Maybe the Holter results will turn up something that can cut the wait time for autonomic testing.

If there's anything confusing in your results from Vanderbilt, I have textbooks which contain extensive detail on the kinds of tests you would have had (ie. what each test is designed to measure and why, the methodology used for each test and why, what data looks like for healthy people and for real case study patients with a variety of conditions, limitations and pitfalls of each test etc.). There should be a range of people on here willing to share their knowledge and experiences with the tests and how the results are reported and interpreted.

I will keep you in my thoughts and pray that you’re able to be sooner. I know the wait can be difficult. I’ll definitely write next week when I get the results. 

9 hours ago, Steven said:

The typical POTS pattern is a higher than normal rise in heart rate upon standing up (a rise of 30bpm or more in the minutes after standing). There are more detailed diagnostic criteria online.

Many people with POTS also have a high heart rate when lying down or sitting at rest, but some of us have a low heart rate when lying down or sitting at rest.

My heart rate at is often in the 40s or 50s when lying down or sitting at rest. I also have fluctuating blood pressure and episodes of chest discomfort/pains/pressure.

In colder temperatures I've noticed instances of my heart rate going from 40s lying down to 50s initially upon standing then 60s a minute later and 70s a minute after that, whereas the usual pattern for me is a larger increase initially upon standing that then drops off slightly then stays around that level (eg. 50s to 90s then stays around 80s, or 70s to 130s then stays around 120s).

I don't have any easy solutions, as simply increasing or decreasing heart rate or blood pressure is not a great solution to large fluctuations.

I'm trying to get autonomic testing done to look for more detail about the biological mechanisms behind the symptoms, which vary from one dysautonomia/POTS person to another. I'm also due to get a report back in a week or so for a 24 hour Holter monitor, which will give me some more detail than I get measuring with a blood pressure arm cuff at home.

A broad explanation for bradycardia is an overactive parasympathetic nervous system, whereas tachycardia can similarly be explained by an overactive sympathetic nervous system. Although sympathetic overactivity is probably more commonly associated with POTS, partly because of tachycardia being used in the name and diagnostic criteria, many dysautonomia and POTS people have symptoms of parasympathetic overactivity. Normally, in a healthy person, there are constant adjustments of both to maintain a balance appropriate to continually changing circumstances, with sympathetic activity going up as parasympathetic activity goes down and vice versa. Parasympathetic overactivity can seem a lot like sympathetic underactivity and sympathetic overactivity can seem a lot like parasympathetic underactivity. So it can be difficult to work out exactly what's going on and what can be done to make it better unless autonomic testing is done to, at least partially, identify what's working as it should and what isn't.

I hope that's of some help and isn't too complicated.

If you haven't done so already, you could also type bradycardia into the search box at the top-right of the page and read what others have written about it in the past. There's more than a decade of previous discussion on here.

Steven, thank you fo much for your detailed reply! I’m hoping the bradycardia is just another annoying POTS symptom. I was most concerned about that because it happened while I was driving and not “resting.” I just had autonomic testing last week at Vanderbilt University. I should get my results some time next week. Their program is by referral only but if you aren’t set up with physicians that know a lot about Dysautonomia I would ask your current physician to refer you there. Please keep me updated on what your holster says and other testing, I realize that POTS is unique to each individual but just being educated about it gives me tremendous peace of mind. 

I have recently been diagnosed with POTS after failing a tilt table test and being seen by multiple physiscans. What keeps bothering me about the diagnosis is I had a more recent episode where I felt as though I was going to pass out while driving I pulled over and attached a pulse Oximeter to my finger and it read 48 then it shot up to 170. This was noticed on my event monitor reading as well. I was under the impression that with POTS syndrome you typically have an elevated heart rate (which I do most of the time). I’ve asked my physcians about the episode I had and no one can explain why it happened. They have since prescribed me medications to lower my heart rate but I haven’t started them because I am scared that it will mke my heart rate too low in the event that I had another Brady episode.... this morning I woke up feeling pressure in my chest I was still lying flat when I took my heart rate it was in the 100s. I’m so concerned about my heart rate that I feel it’s causing me anxiety. My blood pressure also fluctuates from being either slightly high, relatively normal, or even on the lower side. Is all of this things that I will have to learn to manage with this syndrome? Thanks so much for reading my post and hopefully you can provide me with a more detailed understanding of something that is so complex. Has anyone else had Bradycardia not while lying down and suffer from POTS?  Is this all normal? I’m so confused and frustrated at this point. 

Good afternoon! I’m brand new to this site and I have recently been diagnosed with POTS, Joint hyermobility, and Ehlers Danlos. I am a 31yo mom of three and I work full time. I was wondering how to post a post asking a few questions? Can anyone point me in the right direction?