Increased heart rate while standing (over 120 and up to 185) in 18 year old?

[Joker]

Youngest has had some weird issues the last few years but with Covid and having a pulse oximeter I've realized when she is standing (no other exercise or exertion) her rate rate is usually always over 120 and has been as high as 185. She actually passed out when she was 11 and standing for too long but the doc thought it was a one off. We've been aware of it ever since and always try to be sure she doesn't have to stand for too long. She had to go the nurse's office a few times in high school during a science lab because she felt off after standing for a solid period of time. 

We do finally have an appointment with a specialist next month. I'm trying to get more information of things to look into when we see the new doctor and this is definitely one thing I can't figure out.

Also, the pulse oximeter seems to be accurate with the rest of us. It is just youngest that shows an increased heart rate.

[J-rap]

A couple of my girls and I tend to get light-headed really easily, and sometimes faint.  (Well, we know now to sit down and put our heads down before it gets to that point!)  It used to happen to me a lot starting in middle school grades, and then sometime in my mid-20's it got a lot better.  (In fact, now it's very rarely a problem.)  But for us it was just our normal ~ no one ever worried about it.  It happened to me when I stood too long in rooms where the air wasn't moving well.  It often happened to me in school science labs and church!  If I was moving around it was much better, or if I was standing outside.   I also learned to kind of march in place when I was in that situation.  I've also been told you should keep your knees bent (not locked in a straight position).  Randomly, someone also told me that thinking of something that makes you really mad helps because that gets your adrenaline going which can help as well! 

Also, my youngest dd (now in her 20's) has a high average heart rate.  We didn't really realize it until we started taking turns wearing my Apple watch for fun!  Hers is almost always in the 100's (120 wouldn't be unusual), and yes, when moving (even just standing up) it can change quickly to even higher.  It turns out it has always been pretty consistently high like that.  My brother (a pulmonary-cardiologist) has told us that some people just have heart rates that run fast like that, and it doesn't necessarily mean anything is wrong ~ It's just their normal.  This dd is also quite petite and eats a lot so I assume she has a high metabolism...  I've wondered if the high metabolism and the fast heart rate are connected.

Oh, I just thought of something else.  I do think that not eating as many sugars and carbs but focusing more on  proteins and veggies, helps.  I don't know why exactly, but sugary-starchy foods sometimes seemed to make it worse.  (Regarding the off-feeling/light-headedness when standing up.)

Edited September 18, 2020 by J-rap

[PeterPan]

Even a mild fever can raise the heart rate. You might take her temp. Sometimes allergies result in a low fever.

[Joker]

No fever. They seem to consistently be around 98.0. 

[Joker]

It could be her normal but coupled with everything else (aches, pains, numbness, fatigue) I'm just concerned and wondering what else it possibly could be. They said the other day that they are too young to hurt so much and I agree. 

[frogger]

13 minutes ago, Joker said:

It could be her normal but coupled with everything else (aches, pains, numbness, fatigue) I'm just concerned and wondering what else it possibly could be. They said the other day that they are too young to hurt so much and I agree. 

Many in my family get all sorts of growing aches and pains and I have given up chwcking on them but the heart rate thing is certainly something to check out. Many people faint when either standing up quickly usually due to low blood pressure and the body adjusting to the standing position. We have a hole in our sheet rock from DH passing out in the middle of the night when waking to use the rest room. He remembers doing this since childhood.

The other thing is low blood sugar which happens to lots of people (sounds like J-Raps issue above) if there blood sugar levels dip or they failed to eat properly. 

 

This sounds more like https://www.nhs.uk/conditions/postural-tachycardia-syndrome/#:~:text=Postural tachycardia syndrome (PoTS) is,as postural orthostatic tachycardia syndrome.

 

I don't know but it sounds similar. 

[LarlaB]

Do you have any familiarity with POTS (Postural Orthostatic Tachycardia Syndrome)?  That’s what it sounds like to me and it’s been documented as a lingering after affect of COVID- for some triggered into high gear and for others they notice it for the first time. I am in some POTS support groups online and there has been an influx of people being diagnosed with it after having COVID. 

https://dysautonomiainternational.org/page.php?ID=30

It’s a form of Dysautonomia which is a dysregulation of the autonomic nervous system...responsible for all of the “automatic functions” of the body. The most tell tale sign is Orthostatic intolerance- meaning HR climbs from normal rate when going from seated to standing, and remains elevated when standing because blood is pooling in the lower legs instead of circulating normally- this leads to light headedness, dizziness and fainting. The elevated HR is the body’s attempt to get more blood to the head- STAT. Dysautonomia also causes a bunch of other issues. 

I have it and my DD16 has a mild case as well.  She has traditional POTS and her BP drops when she stands, I have hyperadrenergic POTS and my BP rises a LOT when I stand up.  My case was triggered into severe mode after a head trauma.  But I had a history of unexplained fainting since teenage years and have likely had a mild case for 20 years. 
 

I will also add that it can be tricky to find a Dr familiar with it to diagnose it.  I had to do research to find a Dr who could diagnose- an electrophysiologist diagnosed me but knew very little about it - so,  I see a specialist for management because the .  It can take YEARS for people to be properly diagnosed.  

Edited September 18, 2020 by LarlaB

[Melissa in Australia]

anemic?

I have anemia and my heart can race when I am  particularity bad

[Carrie12345]

I first noticed my dd’s high heart rate when we went to the gym together a few times. Well, I noticed how scary high (to me) it was while working out, and then I checked her when not working out. She never complained of any other issues, but was tired all the time. I chalked it up to her late and large growth spurt.

Turns out, she has POTS. We were insanely fortunate to get her diagnosed by the first pediatric cardiologist we saw, after she nearly passed out on a fire scene and required a medical clearance to go back to “work”.
She’s mostly fine. She’d be better if she followed the doctor’s recommendations better. 😛 

[Clemsondana]

This may be a stretch, but it explains some symptoms...does your child have allergies or often eat a lot of foods on the 'histamine food' list?  When I finally did allergy testing, it was because I was experiencing so many weird symptoms that I had resigned myself to working my way through a lot of speciailists, but the allergist seemed the least intimidating and was physically close so I decided to start there to 'get the easy stuff under control'.  I was shocked when allergy treatment eliminated my joint aches, vertigo, and periodic racing heart...I just wanted the drainage and ear pain to go away!  It turns out that I had so much inflammation that not only did my nose and inner ear swell, but my joints were hurting (like arthritis - it felt like I was coming down with the flu for years), the swelling in the ears caused the vertigo, and my heart raced when my allergy exposure was acute, often after eating certain foods while in an environment with high allergy exposure.  It was life-changing, and I had to be assured by my allergist that the allergy meds weren't masking some underlying problem.  

I'm not saying that this is what you're dealing with, but it could be something unexpected and minor that has just spun out of control or is combined with some other problem in a weird way.  Good luck!

[Terabith]

Getting a pulse oximeter has made us realize my oldest has a heart rate that goes from like 110 (sitting) to 145 (standing).   And any exertion at all (walking across house) jacks it up way higher.  We have an appointment scheduled with cardiology for next month.  They have also fainted a few times over the years.  I’m suspecting POTS.  

[SanDiegoMom]

The very first thing to look at is hydration levels.  Both my daughters do this because they are constantly dehydrated.  Which makes blood pressure low, which means when you stand up the heart has to race to try to raise the blood pressure to keep you from fainting.  Both of them have fainted because of this. 

They do not have the numbness, aches, fatigue, etc.  So if that is related I would definitely look further. 

[Joker]

I’ve never heard of POTS. She definitely has several of the symptoms listed but she does log a lot of steps everyday so I’m not sure. She has ASD and pacing is her stim. As long as she’s moving she seems ok (never checked her heart rate while walking though) with being up, it’s just when standing still that she has issues. 
 

Our appointment next month is with a rheumatologist as that’s where the pediatrician thought we should start. I’ll send him a message asking what he thinks about POTS and try to figure out who we should see. 
 

Thanks everyone! I feel like we are having to constantly figure out on our own what is going on because our doctors just seem to shrug everything off. 

[kbutton]

Agreeing on the potential POTS or another form of dysautonomia (there are quite a few). Such a thing is also more likely to occur in people who are hypermobile and/or have allergy-like conditions (at least that's a strong theory). 

There are also some people with a lot a varicose veins that have BP changes because blood pools in the legs (or in the abdominal area if you have them there). Apparently there is also a congenital difference some people have involving the unusual placement of a vein around the hip area that causes something like a varicosity, IIRC. I think it's called May Thurner syndrome.

You can have varicose veins and it not be obvious. I had them for a long time before they were visible, and most of mine are still quite deep, or they pop out and then go away. I have them not only in my legs, but in my hips, thighs, and some internal areas. I always thought varicose veins showed since other family members have visible varicosities, and my grandmother had to regularly bandage her legs due to bleeding profusely if she bumped into things. Mine just don't permanently show, though the ones in my ankles are starting to be visible more often than not, especially in warm weather. Anyway, the idea is that varicosities also cause pooling that leads to dizziness and changed in BP and heart rate.

[Joker]

The allergy stuff is also something I have to look into. She’s had chronic hives that started a few months ago.

I do remember she had to have some test to look at her heart when she was four due to a birth defect with her airways and left bronchial tube but whatever they were looking for wasn’t an issue with her and she seems to have grown out of most of those issues.  But maybe it could have caused something they weren’t looking for? IDK, but talking it out here is reminding me of some earlier things with her.

We don’t have a blood pressure monitor but I think I’ll get one to monitor that as well.

[LarlaB]

59 minutes ago, Joker said:

I’ve never heard of POTS. She definitely has several of the symptoms listed but she does log a lot of steps everyday so I’m not sure. She has ASD and pacing is her stim. As long as she’s moving she seems ok (never checked her heart rate while walking though) with being up, it’s just when standing still that she has issues. 
 

Our appointment next month is with a rheumatologist as that’s where the pediatrician thought we should start. I’ll send him a message asking what he thinks about POTS and try to figure out who we should see. 
 

Thanks everyone! I feel like we are having to constantly figure out on our own what is going on because our doctors just seem to shrug everything off. 

That makes sense for POTS.... walking is ok for many as muscles are contracting and stimulating blood flow but standing in place is no bueno.

My DD16 who has POTS works in delivery fulfillment at Target (shopping for people’s orders) and frequently has shifts with 16-20k steps per day. It’s tiring but doable. But milling about in a museum or standing in line makes her feel horrible almost immediately.

For some with milder, less debilitating levels of POTS,  it’s the “only normal” a lot of people have ever known - and it’s only after diagnosis that they look back and understand ohhhhh that’s why I do xyz. 

For the more severe cases it’s obvious something is very wrong but the symptoms are so complex and overwhelming that most traditional Drs don’t know how to deal with that because of their “pick one issue” treatment mindset. I’ve heard it said it’s the most common condition that you’ve never heard of... meaning there are many cases but not many Drs can diagnose so patients lost interest the shuffle. 
 

A Specialist for POTS is able to see the complex cluster of symptoms- and knows that POTS, many times, is not the only disorder present.
 

RE the hives, you might want to look into MCAS as it relates to allergies.  Mast Cell Activation Syndrome. Again highly complex, not well understood syndrome that is often found with POTS people.  
 

I am sorry if I’m fire hosing you- it is not my intent to internet diagnose.  All of this is shared from my perspective of having hiked thru a physical hell over the last year and have learned a LOT. I simply want to help shine a light when I can 

[melmichigan]

I would look into POTS and Mast Cell Activation Syndrome as well.  They often go hand in hand.  The University of Toledo has one of the best pediatric centers dedicated to the two diagnosis and their materials are top notch.  I have a child diagnosed with both, and after numerous back and forth between cardiology, neurology, rheumatology, sleep, we ended up there for treatment.  We ended up convincing the pediatrician to refer us, because I was sick of going in circles.  It was well worth the trip out of state, as most doctors don't know what to do with it.  https://dynainc.org might be helpful.

 

Edited September 18, 2020 by melmichigan

[Joker]

Thank you all so much!! I feel like we’re going down the right path.

Dd walked around a bit with the pulse ox on and her heart rate slowed down while walking or sitting but spiked when standing still. I also looked up her blood pressure reading from an appointment six months ago and it was 100/60. So, I think getting a monitor and checking at different times and positions could be useful. 

I’m hoping we’re on our way to figuring it all out. 

Edited September 19, 2020 by Joker

[Joker]

Just now, Joker said:

Oops

Edited September 19, 2020 by Joker

[BeachGal]

Covid is suspected of being caused by a bradykinin storm which can cause mast cell activation syndrome (MCAS). The long haulers’ health problems, such as POTS, are probably caused by MCAS. Bromelain can degrade bradykinins. Might be worth checking out if any long haulers are using it. Maybe @Pen knows.

Supplements usually contain both quercetin and bromelain because more quercetin is absorbed if bromelain is present. Is she taking a quercetin/bromelain supplement? The Now brand is pretty good.

ETA: Just did a quick search and, yes, long haulers are using bromelain and other things.

 

Edited September 19, 2020 by BeachGal
added info

[Pen]

1 hour ago, BeachGal said:

Covid is suspected of being caused by a bradykinin storm which can cause mast cell activation syndrome (MCAS). The long haulers’ health problems, such as POTS, are probably caused by MCAS. Bromelain can degrade bradykinins. Might be worth checking out if any long haulers are using it. Maybe @Pen knows.

Supplements usually contain both quercetin and bromelain because more quercetin is absorbed if bromelain is present. Is she taking a quercetin/bromelain supplement? The Now brand is pretty good.

ETA: Just did a quick search and, yes, long haulers are using bromelain and other things.

 

 

Objective: POTS is a heterogeneous disorder of the autonomic nervous system that can result from multiple etiologies. An increased prevalence of vitamin B12, vitamin D 25-OH and iron deficiencies has been observed in patients with POTS.May 21, 2017

 

 

[Pen]

 

Also Look at basics like not having her legs locked and clenched when standing still — it can cause choir members to pass out...

 

[Shellydon]

Maybe POTS? 

[Tap]

DD21 has POTS, Ehlers Danlos and Mast Cell Activation syndrome. Your daughter's symptoms align with common symptoms in POTS patients. If you have any questions feel free to PM me.  DD was severely affected by POTS for a few years and now is doing much better. Not 100% but she has made great progress! A huge part of POTS is getting enough fluids, and making sure they contain electrolytes. DD prefers NUUN tablets, but there are many supplements that work for people.  DD doesn't drink any regular water; everything has electrolytes to encourage her body to retain it as long as possible.  You may want to read up on some POTS Facebook pages to see what people are talking about and what treatments are working/not working. It you are prone to sadness, I would not go to the pages though, there are some people who really, really suffer on there and it can be a bit sad.