Anybody else get the body shutting down feeling?

[Anamaria]

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. 

[moosey]

Sounds like you've had some scary experiences! I do believe I know what you're talking about. If you have an iPhone I recommend downloading an app called "instant heart rate: HR Monitor." It's free and it's pretty accurate, all you have to do is put your finger on the camera. I've tested it against my blood pressure machine's HRM and it's usually less than 5 beats off (pretty accurate imo). If you can monitor how your heart rate is reacting during times when you feel this, it'll give you a better idea of what's going on. Plus it's always nice to have actual "proof" that you're experiencing something. If you've been diagnosed with pots, I think it's safe to say it's pots related. Either way though, log as much as you can. Your heart rate, blood pressure (if you can), sensations, triggers, frequency of episodes. log log log! 

[Anamaria]

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! 

[Scout]

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! 
 

[Anamaria]

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. 

[Anamaria]

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! 

[Don]

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.  

[Anamaria]

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. 

[yogini]

Get a full cardiac workup from your doctor and guidelines for when to go to the ER or calling an ambulance.  If you have a clean workup most doctors tell you you are not in danger as Anamaria says. Usually the emergency medical teams can't be helpful and it's just a feeling you need to let pass. After a while you get used to the weird sensations and it's not so scary anymore.  Hope you feel better soon.

[Don]

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.  

[dizzytizzy]

Like @Don and @Anamaria, I have had episodes where my heart rate has gone from low to 150s/160s. If you search the forum, you can read a bit more about it. But mine only happens at night. So I'll be sleeping (guessing HR is in the 50s during this time or lower), I'll wake up and feel my heart beating faster. By the time I get up, it is 150+. I can usually get mine to abate by bearing down and placing an ice pack on my face while taking deep breaths, but none of this worked last week and I ended up in the ER. 

Those I've talked to (including my EP) think these are bursts of adrenaline. However, I only get them at night so that's kinda screwy. But what isn't about this illness 🙄

Please report back on what your doc says! I'll be interested to hear. 

[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? 

[Don]

1 hour ago, Anamaria said:

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? 

I don’t find it causes me any more anxiety.  I check it every now and then but not all the time.  If things get really squirrely you can set it to alarm at you.  Mine picked up sustained HR over 120 and it didn’t register any physical activity.  

[Pistol]

You mentioned a loop recorder. I had an implanted loop recorder for three years, until it ran out of battery. It is really great and the surgery is nothing to worry about. It records every beat and marks episodes even when you are sleeping. And if you have an episode you can push a button. Then you send the info over the phone to your cardiologist when the recorder has an event or once a month if nothing happened. They read the info right away and let you know if something happens. It is better than a watch etc because it not only tells the HR but also what kind of heart rhythm you are in ( SVT, Vtach etc ). 

[Shellyh]

Yes, I get this exact same feeling more often than I'd like. I panic and pretty much react the same way you do. It's usually worse when I'm lying down which is odd, but I cannot tolerate showers either as this can happen. I wish I knew why it happens. It just seems to be one of those weird issues I have to deal with. The illness sucks! 

[StayAtHomeMom]

On 7/8/2018 at 10:20 PM, Anamaria said:

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? 

I bought a Garmin HR. It actually soothes my anxiety. By checking when I feel bad and when I am doing something it helps to see what my HR is doing. I love my Garmin. It is water proof. I go swimming, shower, and do dishes with it. Had it over a year now.

The only draw back is it does not continuously monitor. There might be a way to do it but I don't know how. It checks every 2 minutes and records it if I am not actively looking at it but sometimes it misses those short bursts of freak out. 

[Don]

I think I mentioned in my other thread that my EP is putting in an internal LINQ monitor on Monday.  He didn’t trust my Apple Watch 100% and wanted more information.  He said the devices are good but still have their flaws.  

[Anamaria]

10 hours ago, Don said:

I think I mentioned in my other thread that my EP is putting in an internal LINQ monitor on Monday.  He didn’t trust my Apple Watch 100% and wanted more information.  He said the devices are good but still have their flaws.  

I’m going to ask my EP zig this is an option for me as well. I met with the PA on Monday and she said if it happened again that they wanted to place another holter monitor....(I don’t want another one) it gives me terrible skin reaction and it always only shows the Brady and Tachy. The loop recorder is a great idea.