orion

So I noticed this weird thing with my heartrate.

When I stand up my heart rate goes above 120 very fast. A few seconds after this it's suddenly slows down to under 90. It stays low for about 10 seconds an after that it goes back to 120 or higher and pretty much stays there as long as I'm standing.

During the 10 seconds that my heart rate is slow I feel a thumping heartbeat and a weird pressure in my neck and head.

Anyone other experiencing something similar? 

15 hours ago, HangingByAThread said:

I swear by my Alivecor Kardia monitor. It costs about $125 and you no longer need a prescription (mine was recommended by my electrophysiologist). It is a case that fits on the back of your smartphone and then you install the app on your phone. You can record and store tons of high quality EKGs that you can then email to your doctor or print out. The app also flags abnormal heart rhythms and if you really need reassurance, you can email a  reading to an alivecor tech who can interpret it (you do have to pay for that).  

I have heard of Alivecor Kardia but I'm too afraid to buy it because it might give me anxiety. 

8 hours ago, nomdeguerre said:

You've had good suggestions for heart rate. My main problem was getting an accurate bp when standing. I have not found an automatic bp monitor that doesn't give an error message when my bp gets low enough to cause presyncope. (30-60 mm systolic.) I had to purchase a stethoscope and a manual bp cuff to be able to get a more accurate reading.

When I was trying to get diagnosed, I kept a chart with my bp and pulse lying, sitting, and standing for 3min, 5 min, and 10 min. (This was early in the process when I was still able to stand for 10 min.)  I kept this for about 2 weeks and brought the data with me to my doc. He, like most doctors I know, likes to have data and felt I was a reliable source.

Good luck in getting your diagnosis. It can be a real battle. I got a lot of information from reading various posts on this website. It was enormously helpful.

Can BP cuffs measure your BP accurately when standing?  

17 hours ago, corina said:

Hi Orion, I'm in the Netherlands too. Have you found yourself a dysautonomia expert? We have several and one is on our Physician's list here at DINET! Here is his info in case you 'd need it):
https://www.dinet.org/physicians/?advanced_search_submitted=1&csrfKey=41f9637ce5a73904d9e1de9729954a31&content_field_7=Gert&content_field_5=&&content_field_17=&content_field_1000=&&content_field_1002[1]=NL&sortby=primary_id_field&sortdirection=asc&record_type=all&time_frame=show_all

 

Hi Corina,

The link returns all US doctors, but I think you mean doctor Gert van Dijk right? Do I need a referral from my GP to visit doctor Gert van Dijk like always?

If my appointment at the internal medicine doctor doesn't work out, I'm going to talk to my GP about this.

Thank you. 

1 hour ago, Jake said:

Hey Orion. I do not know. But i can tell you, that when i had my first Symptomes my heart rate was similar to yours (do you take any meds ?). The Doctors I went to all brushed it off as anxiety because my stress test turned out fine, because I was doing it while lying down cycling.....I went to countless doctors and they all told me it was just in my head. I can not understand how i can get my heart rate from 130 to 55 just by sitting down if this is only anxiety.  Did you have a flu Prior to experiencing These Symptomes or a prolonged time spent in bed ? Greetings from Germany

 

PS: How old are you? Are you overweight ? Have you been physically active ?

I honestly don't know how it feels like to have the flu because I can't remember the last time I had it.

I don't take any medications. 

With me it started with random spurs of dizziness, fatigue and headaches. Actually just 2 weeks prior to my first symptoms I was in the Swiss alps for 3 days and walked like 70 km in these 3 days and felt fine. 

I'm 28 years old, and not overweight. I actually lost 8 kilos in the last two months and am 73 kg right now(183 cm). Male. 

I'm not the most active person and have a desk job, but I did get the occasional exercise like cycling and walking. 

I'm your nabour from the Netherlands by the way

I did manage to convince my GP to refer me to an internal medicine doctor.  Hopefully the internal medicine doctor doesn't immediately think it's in my head like the other doctors did. 

My resting heart rate is around 90 bpm. But it can go to 75 when I'm in bed for hours. 

Smartwatches/fitness watches can only to measure your heart rate and count your steps.  They can't measure your blood pressure or oxygen saturation. 

I tried fitbit to keep track of my heart rate, but it couldn't accurately  measure my heart rate upon standing.  

If you want to track your heart rate, use a wahoo/polar heart rate band. 

Of you want to track your oxygen saturation, use a dedicated oximeter. 

If you want to measure your BP, use a dedicated BP meter. 

There isn't a good all in one solution. 

Hi, 

I went to psychosomatic physiotherapist this morning because my GP thinks it's a mental issue. 

I told the therapist about my elevated heart rate and she decided to let me run on the treadmill to gain trust in my body. Just standing on the treadmill my heart rate was 140bpm. I could tell she was confused about this.   After running on the treadmill for a few minutes minutes at 8 kmh/5 mph pace my heart rate went to 195 bpm.  

Is this a characteristic of POTS? 

When I stand up my heart rate increases up to about 130 bpm which is usual with pots. However after a few seconds of standing up my heart rate goes down by alot and the few beats seem very hard. I feel it in my chest and and I also feel pressure in my neck and head. This all stops after a few seconds and my heart rate speeds back up to over 120 minutes. 

You can see it in the following video:

The hard and slow. Beats start af 23 seconds. 

Are these PVC's? Is this  a symptom of pots? 

6 hours ago, Ashleigh said:

Your symptoms sound pretty similar to mine, and I’ve been told I have IST with mild orthostatic intolerance. From what I’ve been told, a consistently high resting heart rate (95 or higher) is usually a key difference between IST and POTS. With IST, my heart rate also elevates substantially with minimal activity, including standing. Of course, there’s a lot of crossover between IST and POTS symptoms, so I would absolutely recommend seeing a doctor that specializes in dysautonomia - it has really helped me!

IST is also likely.  I do seem to experience an elevated heart rate with moderate activity. My heart rate during a half hour walk is between 140 and 155 bpm. 

During the cycle test at the cardiologist my heart rate peaked at 200 bpm after about 15 minutes and they decided to stop there. 

Is this abnormal increase of heart rate during exercise only a characteristic of IST or also of POTS. 

My heart rate during sleep is pretty normal though. I have measured it and it's between 50 and 60 bpm. Is this something we see in POTS or IST? 

I do see a clear slow down of heart rate when exhaling.  I'm not sure if no difference in heart rate between inhaling and exhaling is a symptom of POTS. You might want to ask your doctor these questions. 

Hi,

I experience lots of issues that are kind of debilitating. It started with feeling dizzy/light headed at random times during the day. This was two months ago. As time went by, I started to have more issues like fatigue, headaches, exercise intolerance, weird feeling in stomach, reflux and GI issues.  I also experience pain in thorax area, shoulders, neck and arms. 

My resting heart rate sitting or laying is around 90. Sometimes it's higher like over 100. If I rest in bed for hours my heart rate can go under 80. When I stand up, my heart rate goes to around 120-130 bpm and stays there. So this can by an increase of more than 50 bpm. On average I would say it does increase more than 30 bpm.

I don't necessarily feel dizzier when standing than I already am.   But I do feel really uncomfortable if I stand for to long.

Could this be pots or some other type dysautonomia?