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High but also variable HR


DizzyPopcorn
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Greetings from Canada,

First of, i'd like to apologize if this seems like a repeated question. I actually found this forum by typing on google "Anxiety or POTS?". After reading many posts, i am still left with many questions about my own condition.

Also, i would like to mention that by NO means whatsoever would i ever downplay symptoms of POTS compared to my anxiety. I apologize if any take offense by comparing them both.

A bit of background on my situation (shortened, because i don't want anyone sleeping!) : I'm a male of 25 years old. I have been living like a shell of myself for a good year. I've been diagnosed with GAD (Generalize Anxiety Disorder) following the death of my mother from cancer. My anxiety mainly focus on death / diseases. Especially anything related to my heart.

Many tests have been conducted, including 7 ECGs, 2 echo cardiogram, 3 full blood work including cholesterol / blood sugar, Balance test, blood pressure. All were negative (fine), and my heart apparently is in A1 condition.

However, despite all those tests, i remain tired, with many symptoms and my quality of life diminishing by the day. I am crippled by my fear of these symptoms. They are : Dizziness (standing / sitting), tachycardia, breathing problems (often comes with dizziness but not always). Shallow breathing, cold legs, fatigue, heart palpitations (especially sharp ones, feels like stabbing). Sometimes my heart palpitations feels like a drum playing in my chest.

I do not drink. I do not smoke. I don't do drugs. ****, i don't even drink energy drinks / soft drinks. I only drink water, and for the most part, eat well and enough. Could exercise a bit more (i'm about 20 pounds overweight) but i'm quite tall so fat doesn't really show.

My symptoms (especially my heart rate) seems to be worst when i 1) stand 2) kneel 3) bend. Right now, while typing this, my heart rate is 92 BPM. I'm sitting, and upon standing, will probably go to 100-105 easily.

Now the reason for my visit is... I've read enough medical information that i probably know more about diseases than my doctor (exaggerating a little bit here). I probably know way too many medical name of symptoms.

But i can't shrug the one thing that happens to me : When i go from standing to sitting, often my heart will race heavily for about 10 seconds, often in the 20-30 bpms, and will return to baseline after that. Usually it stays there unless i move or do something else.

For example, say my heart rate upon waking up is 70, it would touch 90-100 for a few secs and quickly go down back to maybe 75. My blood pressure upon standing stay the same or elevates a bit more. Otherwise at rest, my blood pressure is 115 / 70 and my heart rate sits (most of the time) at 80.

Now, what confuses me with POTS is the "on standing" effect on heart rate. Why is my heart rate bouncing so much and then settling back? Even if it's a few seconds, does it still count if its over 30? Do i have POTS? What if its 28. Not POTS?

Most of the time i can stand for a while without any problem, but then again, i can't really be sure if its my anxiety playing tricks on me or if i truly have symptoms of POTS.

Laying down on my bed this morning (when i was tachy with a heart rate of 105 while standing) did not improve it at all. It stayed between 90-100 while laying. I still had palpitations. ****, i still have some right now.

Most of the time, taking a klonopin (prescribed by my doctor) ease my symptoms a lot, especially the heart rate. But i still get a bounce when i stand.

I was suggested by a cardiologist to undertake a tilt table test, but i have to go through my GP. (and she thinks it's all anxiety, so it will take a fair bit of convincing to get the test)

Thank you for taking the time to read me, and i hope that all of you can have a good day despite your symptoms. I honestly would trade all the money in the world, ****, even my car, to get my life back.

Gabriel

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If you have not read this already, here is an overview of POTS:

https://www.dinet.org/content/information-resources/pots/pots-an-overview-r95/

"Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising."

There can be confusing overlap of POTS with anxiety.  Many people with POTS are initially misdiagnosed with anxiety.  I was.  Firstly, POTS symptoms can generate anxiety for patients, and secondly, the symptoms can mimic anxiety--particularly from the view of a physician.  Anxiety can also exaggerate POTS symptoms.  Medications used for anxiety are sometimes helpful to POTS patients, such as klonopin.

As far as hr being variable, I think many patients find that symptoms vary from day to day and also time of day.  When I had severe POTS my hr was consistently rising well over 30 bpm on standing.  But as my symptoms waxed and waned my hr was not consistently 30 bpm higher on standing.  I will say I tended also to have a generally elevated hr--my resting bpm rarely went under the low 80's.

It can be a challenge to convince a doctor that testing may be needed.  I think most doctors would agree that anxiety does not cause orthostatic problems--heart rate changes from sitting to standing.  It might be helpful to ask your GP about this and have them observe it, if possible, at your appointment.  It would be ideal to be evaluated by a specialist.

 

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Hello MomtoGiuliana,

Thank you for taking the time to respond :).

Do most people have problems while standing only, or they get symptoms while sitting also?

I feel the same for the heart rate. On some rare occassion, usually when i wake up or lay down before bed, i have a resting heart rate of 63!!! I know this will sound stupid, but i'm so happy when it happens... Sometimes i wake up with 80, etc. It depends on the day

I did read pretty much everything on the website already, but thank you for linking that page. I have bookmarked it for further use.

May i ask you a question? I've had a few "experiences" last weekend and i'm unsure what to do about them.  Do people diagnosed with POTS experience these symptoms?

1. : I shoveled snow for a good 3 hours last saturday. I do not recall getting ANY symptoms whatsoever, aside of seeing my heart rate increase. After being done and having a small rest, i took my heart rate standing and i was 95. Is a high heart rate standing at all time is indicative of something problematic? By contrast, my father, who's a fit guy for his age (57) had a heart rate of 70 when he finished... I feel like my heart is always working in overdrive, and i'm pretty sure i wasn't stress about shoveling snow...

2. : Went outside and had a jog / walk of 30 mins without any symptoms the day after. However, whenever i was stopping here and then to take my heart rate, it was never below 120bpm standing. After being done and resting for about 30 mins, heart rate was still laying around 90 bpm despite being in bed and not moving

3. : This morning i woke up and heart rate was 80. I quickly stood, took my heart rate (saw a little graph showing that i had a 10 sec of spike of heart rate, probably around 20bpm +) and then after that it returned to baseline of 80. I then took a shower, returned to the same spot and took it again... 80 bpm still. Did not move. I hear that POTS patient have a lot of problems with showering in the general.

4. : After the shower i took this morning, i was watching TV in a standing position. While standing, i felt after a while a "woosh / head rush". I automatically took my bpm and boom, it was sitting at 105 bpm. It did not calm down even after sitting or laying on bed. When i went from a standing position to a laying position, my heart reduced to around 90-95, but did not improve much.

5. : This morning i had severe dizziness at work with breathlessness. BPM was 100 while sitting. Standing did not make BPM raise that much more (105). Taking a klonopin brought it down back to 77.

All i know is when i take a klonopin, i usually feel lots better and my heart rate return to baseline of 80.

Thank you again for taking the time to read my situation, it is really appreciated. Thank you also for putting in place this kind of resources online for all.

Gabriel
 

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I'm not sure if it's pertinent, but my mother had algodystrophy following an injury to her foot about 14 years ago. Does anyone here diagnosed w POTS also have a dystrophy syndrome?

Just thinking out loud. I'm not feeling the best at moment so i'm brainstorming a lot.. Probably a bad thing.

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When my POTS was severe, I would have been unable to shovel snow.  However, as it improved I would have--and I would say that in general, for me, my hr elevates easily with minimal exertion, and when I was more sick would remain at a fairly high resting rate.

I would suggest measuring your lying/sitting and then standing hr a couple of times a day--eg AM and PM--and keep a record to share with your doctor.

 

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A Tilt table test measures continuously from lying to standing.  You may just need to see what your hr is doing to decide how to present this info to your dr.  I would take a measurement either lying or sitting and then another measurement standing--possibly once immediately and another measurement after a minute or two or standing.  I would just be consistent about it with time of day and whatever protocol, and document it. In my experience many doctors do not like it when patients self diagnose.  So you may want to present it in terms of this is what I noticed, so I documented it, please tell me what you think.

Writing down all of your symptoms would be helpful too.  I know sometimes I forget things to tell my doctor once I am in an appointment.

I do realize it can be a thin line between providing a doctor with good information and so much info the doctor concludes the problem may be anxiety rather than another condition.

I finally agreed to see a psychiatrist--to rule out psychiatric explanation.  The psychiatrist felt that my symptoms had a physical origin--she told my GP that anxiety does not cause changes in heart rate on standing.  So seeing a psychiatrist can be possibly helpful if your doctor still feels the symptoms are rooted in anxiety and you are not sure this is correct.

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Hi Momto,

Thanks for the tips. I did see a psychiatrist a while ago and she simply "treated" my anxiety.

I did it this morning and last evening. Honestly... I don't know what to do about all this.

Last evening my readings were completely fine (after eating quite a big meal). Laying, blood pressure was 130 / 70 pulse 67.  Sitting was about the same, 127 / 71, pulse 68. Standing, blood pressure was 135 / 80, pulse 81. Did not increase after 2, 5 and 10 mins. Stayed the same.

This morning was a whole different story, however. In fact, it's been bad since i woke up.

Laying down : 125 / 70, pulse 65. Sitting was same blood pressure, 80 pulse but after a while got down to 71. Upon standing, got to 100, pressure 135 / 82.

After that i decided to lay down completely. Heart rate went down to 80 and did not go lower.

Decided to take my "chances" and went from laying to standing still. It was horrible. Got chest dull feeling / pressure, light headed. Dizzy. Heart racing. Upon taking it, my blood pressure was 159 / 80, 115 BPM. Then got back down to 100. My blood pressure NEVER drops when i go from laying to standing.

I honestly do not know what to believe anymore... Can all of this happens in a matter of weeks? I was fine last summer for sure despite the elevated heart rate. I could run and do everything i want. Right now im at work and i feel completely destroyed, tingles in legs / hands, wobbly head and heart rate is 90 bpm while sitting. I cried on my way to work and this isn't me at all. All i wish is to be normal again, not feel like being crippled by a disease.

I'm... scared. I don't know what to do with all this. My next appointment is in 2 weeks and i'm not sure i will hold until then. I'm also not sure if this is anxiety that is really tricking me, or if it's truly POTS and i have anxiety on top of it.

Sometimes i can stand for a while and be fine, even if i have a BPM of 100. I don't know.

I'll have to get a tilt table test for sure. Hopefully my doctor will be cooperative. I will try to make it seems like i don't know what's going on.

Thank you for taking the time to read me,

Gabriel

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I would document what you are finding.  For many patients w POTS symptoms are worse in the AM and things improve as the day goes on.  My doctor told me to drink a lot of fluids immediately on waking and it did help....part of the problem is we tend to be dehydrated in the AM.

POTS comes on suddenly for many patients.  And yes it could start with just noticing elevated hr and progress to more disabling symptoms.  This happened to me.  It can also be variable in severity from one day to the next or even one hour to the next--in my experience.

The good news is, if it is POTS, there are many meds that can help.  And it can just improve over time for many people even with no treatment.

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Well thank you for the help :). I have read other encouraging stories about people with POTS that can lead a somewhat normal life after diagnosis.

Honestly... For a long time when i had severe anxiety, all i wished for was to be diagnosed with something. As to stop other from saying "it's all in your head, stop worrying". Nothing was worth than hearing this. Maybe i wished too much :|.

Quick question, is adrenaline generally frowned upon for people with POTS? I'm an active gamer in competitive games and i would honestly be quite sad to lose the ability to play those. Can people with POTS generally sit for a while or is it different from a patient to another?

Gabriel

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To get the NHS to do anything, I have had to spend my own money in order to present them with evidence. They couldn't detect I had Ventricular Tachycardia for two years until I bought my own little hand held ECG machine, (See "My VT" below), I then had cardiologists ringing me up at home telling me to ring for an ambulance every time it happened.

They were calling my breathlessness anxiety so I bought my own recordable SATs oximeter, when I showed my GP how low my oxygen gets, (see green graph), she has referred me, I note how my heart beat went from 63 to 114 just from getting out of bed, but I do not consider myself to have POTS.

If you have spare money, such machines might be useful to you to perhaps reassure yourself that you are fine and so can enjoy your life. If there is something amiss, then useful to be able to show your GP something, but I wonder if lots of people might find things wrong with themselves if they went to too much trouble to look, so do be careful to not stress yourself into having something real that might have been avoided.

Sorry about your Mum. 

 

My VT gmapbhciggkpcnok.jpg

Sleeping after Sprats and rice.jpg

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Thank you very much for sharing graphs and all! Where do one would go to get such devices? Can i get them from amazon and the sort?

My health anxiety has already took a severe toll on me, i take my pulse over 100 times a day (no joke, i can show you my history on my note 8). I also take my blood pressure fairly often.

My 02 seems to be fine, always between 97-100, either laying down or upright. In fact, when my heart race, it seems to always go back to a 100.

And thank you for my mom :). Sometimes i tell myself that at the very least she's not suffering anymore. Prior to her cancer, she had dealt with 15 years of algodistrophy. The pain she got was tremendous. She never complained about anything and was a very strong character, so for her to admit she had pain... It was probably intense.

In any case, thank you for sharing with me, I'll take a look at those devices and see if they're not too expensive.

Gabriel

EDIT : May i ask why you dont consider yourself to have pots if your heart rate had a big jump like that from standing?

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1 hour ago, whoami said:

Thank you very much for sharing graphs and all! Where do one would go to get such devices? Can i get them from amazon and the sort?

My health anxiety has already took a severe toll on me, i take my pulse over 100 times a day (no joke, i can show you my history on my note 8). I also take my blood pressure fairly often.

My 02 seems to be fine, always between 97-100, either laying down or upright. In fact, when my heart race, it seems to always go back to a 100.

And thank you for my mom :). Sometimes i tell myself that at the very least she's not suffering anymore. Prior to her cancer, she had dealt with 15 years of algodistrophy. The pain she got was tremendous. She never complained about anything and was a very strong character, so for her to admit she had pain... It was probably intense.

In any case, thank you for sharing with me, I'll take a look at those devices and see if they're not too expensive.

Gabriel

EDIT : May i ask why you dont consider yourself to have pots if your heart rate had a big jump like that from standing?

Excuse me for being personal, but I am sure your Mum would wish you to enjoy life so do try to relax a bit, as you yourself have said, your anxiety has taken a severe toll. Google "Sanjay Gupta anxiety causes palpitations" and watch some of his videos, he is a great cardiologist,

So, in order for you to be able to reassure yourself, I bought a "Prince 180B" ECG from Amazon. During my frequent ambulance rides, I was able to see what the expensive professional ECG graphs looked like, and they looked exactly like the readings from my cheap device. Ignore the machines comments though as they are rubbish, just look at the graph. Any questions on amateur interpretation, you are quite welcome to ask me as I have been off work since March and spent a lot of obsessive time seeing what these things mean.

The Oximeter I got was the CMS 50F Pulse Oximeter, highly regarded by the CPAP community.

As for why I dont consider I have POTS, and something I hope you will consider, its the actual adverse symptoms that I think are important, rather than readings. I see how some of these girls with POTS suffer, I have many Autonomic problems but I can stand up all day without my legs going purple or fainting. My GP rang me yesterday to say she is referring me to the Neuropathy Hospital in London, I dare say they may well give me a Tilt table test, maybe my Dysautonomia will indicate I am a little borderline?, but I haven't even listed POTS on my list of symptoms. I am thinking sure, that heart beat went up by a lot, but maybe its because I was asleep, then woke up probably as a result of being oxygen starved, then stood up, but you can see almost right away my heart beat then started to come down on its own, so maybe that part of my ANS works OK, but is just a little slow. Like I said, don't stress yourself about figures and readings, its how you function that is the important thing.

Any time you want a bit of reassurance or chat, just ask, its OK for me, I am quite old now, but you are young and youth is to be enjoyed whilst you still have it.       

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You are such a good person, thank you very much. I can stand for a while too and my legs don't turn purpleish. But some of my other symptoms are so bad that I can't stop myself from trying to find a problem to those symptoms.

Once I was in the Er, and i saw an old person, maybe 80 years old. He was feeling atrocious. While waiting, I talked to him a little bit. He had so many conditions. Yet when I asked him if he worried about it, he said no. This puzzled me so much. How can people not worry about this stuff??? Even more so if it means death.

You are right about what you say for my mother. She would hate seeing me like this just as I hate seeing me like that. But I can't bring myself to stop it.

The reason being... I graduated in computer science. I'm an extremely logical person and enjoy finding solutions. I see my symptoms as a perpetual problem that no matter what I do, I can't find solutions. And until I either find the problem and solve it, my mind goes into circle of "what if".

I waste countless hours of my day searching the web about medical problems, drugs and whatnot. I should not be doing that at 25 years old. I should be out there enjoying life. Instead, each time I come out of my car I feel dizzy. Each time I climb stairs it feels like ****. Each time someone invite me somewhere I exclude myself by fear of being a burden on others in case I faint. It is just not fun. Nothing is fun anymore. The only thing I do is sleep, eat, work, worry. Oh and be dizzy and tachycardia lol.

I'm sorry for the rant. I haven't been myself for a while.

Thank you very much for taking the time to reassure me. It means a lot.

 

Oh and funny you mention Dr sa Jay. I know him from YouTube. I actually had an appointment with him last Sunday through webcam. It was him who actually talked about the possibility of pots and that i should get a ttt and a stress test.

 

Have a good one Peter

 

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Maybe we are alike in the logical need to understand things completely, and a very useful trait it is too when you encounter over-worked doctors whose main agenda is to not spend money, and it does sound like you have quality of life symptoms that need to be addressed.

I dont feel these are life threatening issues you have though which it seems is what worries you, they need to be sorted yes indeed so you can enjoy life.

For instance, whilst indeed my Ventricular Tachycardia was life threatening, it was cured with an ablation. but I still get ectopic beats mind, especially after eating, have a look at this next ECG of mine, every other beat is an ectopic beat, yet my cardiologist considers even that to be fine and has written that I now have a good and stable heart and so I have started a reduced hours return to work. The heart is a pretty tough thing with back-up mechanisms. I am not worried with a heart that behaves like this. 

 

Show this one when oxygen is 89%.jpg

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I have trouble understanding. How can you not worry about your heart? Did you come terms with it?

 

When I compare myself to others, I feel weak. Deprived of what I could do. Death scares me a lot. Pain even more. Do you not think that sometimes your heart could stop with all those palpitations?

 

I'm sorry if I'm being too personal. Let me know if you don't want to talk about it.

 

Gabriel

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8 hours ago, whoami said:

How do you get a report like that with your O2 meter? I just ordered the CMS DL50 and i don't see an option to connect it through usb and get the stats.

I am not familiar with the CMS DL50, on my CMS 50F, you get a CD that puts a programme on your computer, the device has a scroll down menu and you hold down the record button, then press yes. To download the data onto your computer, you connect the USB which is also the charger, open the green "SPO2 Assistant Review",  click on the "Not Active" box, a new window opens up, you scroll down on the device to the upload option, which then goes on your computer. To start with I then had trouble in that I couldnt work out how to save it and it wouldnt print. I then found the way to do it is click print, but select the XPS document as your printer, that then saves to your computer rather than printing. Then find an online covert XPS to JPEG programme, change to JPEG, you can then print or post. 

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9 hours ago, whoami said:

I have trouble understanding. How can you not worry about your heart? Did you come terms with it?

 

When I compare myself to others, I feel weak. Deprived of what I could do. Death scares me a lot. Pain even more. Do you not think that sometimes your heart could stop with all those palpitations?

 

I'm sorry if I'm being too personal. Let me know if you don't want to talk about it.

 

Gabriel

The Cardiologist said it was nothing to worry about, guess he knows, my outlook on life is my worrying wont make it better anyway. Thats at its present worst, and it goes after a few hours, generally after a meal its more like this one, with an ectopic every fourth of fifth beat. I feel a bit strange but no real symptoms from the heart, so dont worry about it, I am a bit more concerned about my low blood oxygen level to be honest, I am seeing a sleep apnea clinic next week so will see what they have to say.

Sitting down after dinner 3rd dec 9oy98-c52p5-001.jpg

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3 hours ago, Peter Charlton said:

The Cardiologist said it was nothing to worry about, guess he knows, my outlook on life is my worrying wont make it better anyway. Thats at its present worst, and it goes after a few hours, generally after a meal its more like this one, with an ectopic every fourth of fifth beat. I feel a bit strange but no real symptoms from the heart, so dont worry about it, I am a bit more concerned about my low blood oxygen level to be honest, I am seeing a sleep apnea clinic next week so will see what they have to say.

Sitting down after dinner 3rd dec 9oy98-c52p5-001.jpg

Oh I see.

Apparently I ordered the CMS 50dl that does not have computer recording but worst case I'll record with my cellphone. Unfortunately other models were just not available on Amazon.ca

Well I wish that they find the reason behind your low O2 then and that a CPAP will be enough to correct it if it's sleep apnea :)

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Mine does this too on the oxymeter, however please keep in mind that oxymeters aren't instant. They need 5 seconds or so to recalibrate to big changes. Movements can also falsify the data so you got to stay still when you do it.

 

If you stand still and take your measurements, is it fluctuating a lot?

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13 hours ago, Davidinaz said:

My heart is always fluctuating like 90 then 96 then 104 then 87 it does this in seconds continually

Does anyone else's do this please let me know is terrifying.

Yes, and its one of the factors that has stopped my cardiologist from using the usual "its anxiety" excuse and arranged for me to be referred to a Neurologist.

The lower blue graph is heart rate variability, the better one is me just sitting down. The more extreme one is as a passenger in a car journey, with a spell in the middle walking very gently around a museum. Though the part that attaches to my finger is certainly a better grip than the ones they use in hospital, I will concede that movement can give false readings, though being aware of this, I was very careful to keep this hand still.

Summery report evening before sleep Printing SpO2 Report.jpg

Car trip to Cambridge y8z9t-45b55-001.jpg

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Wow I was starting to feel like I was the only one I read people on here that say when they're laying down their heart rates like between 70 and 80 and even when I'm laying down mine can pop up sometimes it'll go from 75 to 97 or higher into the 104 and then it back down it's constantly just popping up down up down

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