Wondering whether I might have POTS

[Greyhound]

Hello  I know you must get lots of posts like these so I apologise if I'm being tedious. I'm wondering whether I have POTS. For several years I've been struggling with my energy but in the last year it's got worse and I've just been exhausted, no matter how much or little I've tried to do. I've been off work for the last five weeks because the fatigue just got too much (I'm really scared - my sickness record was already bad and I'm scared or losing my job, which I love).

I can go out but can't walk far or stand up for long (just standing is worse than walking) I have to use a mobility scooter or be pushed in a wheelchair. I haven't even been doing any of my sedentary hobbies like reading or language learning because I just can't concentrate. Mum has been helping me with the cleaning because I can't do much.

I thought it seemed like Chronic Fatigue Syndrome and my doctor thinks so too and I've been referred but haven't received an appointment yet. In the meantime, though, I've been reading about POTS and I wonder whether if it's that that's making me fatigued but although I can feel my heart beating very fast and hard, I don't often feel dizzy like others seem to.

Yesterday morning when I got up, my heart rate was 117 standing and this was sustained for 10 minutes (resting rate was 72). When I got up this morning, my pulse wasn't abnormal on standing (although I didn't feel well standing and my heart was thumping). I tested again at about 11:15 this morning. Here are the results:

After 5 mins lying down: 79 (and my heart fluttered to begin with as it lay down)
Straight after sitting up: 115
After 5 mins sitting up: 88
Straight after standing: 132
After 2 mins: 107
4 mins: 110
6 mins: 110
8 mins: 111
10 mins: 115
I walked to the next room and it went up to 132.
I sat down and it took 1.5 mins to settle back down to a fairly steady 88.

During this time the rate kept spiking to 115 or more, as my monitor kept beeping, which I've set it to do if it goes over 115.

My legs ached worse as the time went on, although eased a little by the end and my head started pounding slightly half way through but then eased.

Measurements were taken on a Beurer PM25 with chest strap.

Has anyone diagnosed with POTS had symptoms like this?

[Greyhound]

I should also say that I sometimes get very shaky for no apparent reason, particularly in the morning, I think accompanied by sweating too. At work I get headaches a lot and sometimes migraines (not from stress). I often feel nauseous in the morning and have unexplained bowel and bladder problems. I get muscle aches and my muscles tire very easily as if there's no oxygen going to them, particularly my legs or, if I raise them anything above chest level, my arms. I often start to get feelings as if I'm about to go down with a cold, like a sore throat and that kind of 'ill' feeling you get in your body (can't describe it) if I do too much.

[BuffRockChick]

Hi @Greyhound!  Your symptom pattern sounds very familiar! 

In my opinion, the best thing you can do for yourself whilst waiting for doctor appointments is to clarify your symptoms.  What makes them better?  What makes them worse?

There are several kinds of orthostatic intolerance.  A tilt table test is the diagnostic test to determine which type of orthostatic intolerance a person has.

I haven't had my tilt table test yet!  I've seen my primary doctor and a neurologist.  Waiting for cardiology appointment still.  Cardiology does the tilt table test here.  Waiting for diagnosis can be maddening.  I have preliminary diagnosis from 2 doctors so I'm sure I have POTS, I just need the tilt table test to confirm it.

 

[StayAtHomeMom]

I would say it is possible. I would talk to your doctor and see if they will put you on a tilt table. I think I have seen people have chronic fatigue and POTS diagnosed together as well. I hope you find answers soon. I know how crazy POTS can make you feel.

[Greyhound]

Thanks for your replies. I have an appointment to see my GP next Thursday and I'll ask him then.

in answer to the question about what makes my symptoms better or worse, I've been trying for the five weeks I've been off work so far to work that out. It hasn't made much sense. Now I've got the heart rate monitor its making more sense but not completely. For example, this morning I tried another standing test and the results were:

after 5 mins lying down: 79

after 1 min standing: 90

after 5 mins standing: 89

after 10 mins standing: 99

(Blood pressure normal.)

So not POTS criteria, yet I'm still getting the pounding heart, slight hissing/whistling in my ears, aching legs, etc. and feeling rubbish.

However, when I stand, my heart rate shoots up to around 135-140 and then slowly goes down again (yesterday it went up and then down to 107 and then slowly crept up over the 10 mins to 115). I thought maybe it was normal for it to go up very high and come down again but I've just tried the monitor on my partner and his heart rate is so steady compared with mine, with about 10 BPM rise when he stands up and then it stays there. I know that's just comparing with one person but it's startlingly different. I'm wondering whether this sudden rise but then a fall can still be POTS and I'm wondering whether it might be what's causing fatigue. How much does your POTS fluctuate over a day and between days? Is this pattern also familiar to you?

[BuffRockChick]

My pattern is symptoms are worse in the morning, and improve throughout the day.  By nighttime - when I feel normal - I only have about 20 bpm increase in heart rate upon standing.  I sometimes see a pattern of my heart rate spiking when I stand, dropping a bit over the first 5 minutes and increasing over the next 5 minutes.

Between days, mine can fluctuate wildly.  The most increase I've had was 89 bpm between lying down and standing (that was not a good day!!!).  The least has been 20 bpm on a rare, exceptionally good day.  MOST of the time it's 30 - 45.

Going over 120 bpm within 10 minutes is diagnostic of POTS - in absense of differential diagnoses, of course.  

I'd suggest doing the stand test morning, midday, and night.  Some people on this forum report opposite pattern with symptoms worse at night.  Repeating the test will help gather more data so you can look for patterns.

 

[StayAtHomeMom]

I am one of the ones who I feel better in the morning and worse throughout the day assuming I slept ok the night before. I don't always jump the 30 points when standing, but when I average it over time there is a large consistent jump. My husband's heart rate stays pretty steady when he stands up, I think it goes up 5 or 10 points but levels quickly and steadies. When I did a poor man's the first time I thought my machine was broken, but tested my husband and it was normal. It kind of seems like the heart rate jump is hard to catch for most doctors. A lot of people talk about they had to be tested multiple times on a tilt table for it to show. 

[Greyhound]

Thanks both for your replies  

 

5 hours ago, BuffRockChick said:

Going over 120 bpm within 10 minutes is diagnostic of POTS - in absense of differential diagnoses, of course.

Could I please just clarify this - does the 120 have to be sustained as well? I just tested myself briefly and it went from 83 (lying down) to 137 but then started dropping again fairly quickly to in the 90s. I feel shaky and very tired with a weird feeling in my head that I can't explain that I get sometimes when I'm very fatigued.

[StayAtHomeMom]

No it should be sustained. It may be delayed. Sometimes your heart rate may not rise immediately. I would suggest laying down, stand up as smoothly as possible so you don't move much, then check it right away, then 5 minutes, then 10 minutes. I would recommend using a blood pressure machine because it "snap shots" your heart rate. I have a garmin and it has a slight delay if I watch it. So I imagine watching a heart rate monitor would bounce while it configures your heart rate. Be careful if you stand straight up, not everyone can do it and if you can't handle it don't force it and hurt yourself.

[Kristina]

Hi Greyhound, your symptoms sound very similar to mine. My heart rate goes from around 80 to 90 resting to over 130 when I stand up, and I feel a lot of the same symptoms you do especially the thumping heart, aching legs, and the fatigue... I never realized that my increased lack of ability to concentrate could potentially be a related symptom of all of this. 

[Greyhound]

Thanks so much for your replies.
I just did another standing test:

Lying down: 72
Immediately after standing, rose to 135.
Standing 1 min: 105
Standing 5 mins: 102
Standing 10 mins: 102
Took a whole minute to go back down afterwards.

BUT it wasn't sustained: during this time it was all over the place, going down into the 90s, going up to 115, going back down again. What is my body doing? 

Also, I did a mini test afterwards with the blood pressure monitor and it was:

Sitting: 107/76, 64BPM
Standing 1 min: 116/75, 76BPM

It's not giving a different pulse reading from my HR monitor - they both agreed with each other. But it was totally different from standing previously.
Talk about unpredictable. I've no idea how the doctor will be able to capture this at the surgery if it's POTS one minute and not POTS the next.

[StayAtHomeMom]

Try to do the full thing with the blood pressure cuff and watch your blood pressure. A slight change is normal like what you had but I wonder if it changes more. Heart rate will sometimes increase just due to blood pressure changes. Either way your first test said yes get a tilt table done to check.

[BuffRockChick]

@Greyhound, are you sure you're standing still?  Pressing the button on my blood pressure cuff is enough movement to change my heart rate by 10-15 bpm.  Are you fidgeting, swaying, experiencing tremor, trouble keeping balance, or hyperventilating?  All those will significantly effect results. I didn't realize how much I move while standing until I tried wearing compression calf sleeves - they made standing feel effortless.  That's also when I realized how much cognitive symptoms I have - those symptoms had become my normal so I didn't notice them anymore.

Have you noted changes in caffeine, stress, sleep, exercise/movement, resting heart rate, time of day, diet, time since last meal between stand tests?  I'm always curious, I'd want to know why I was seeing variability.  You could potentially use that info to your advantage.  I was so afraid of being dismissed by my PCP that I used my triggers - losing just a little bit of sleep for 2 nights before, using an alarm clock in the morning, and scheduling my appointment early in the morning.

A delayed orthostatic hypotension or orthostatic tachycardia reaction is not atypical of CFS patients.  I can't find my source now, but I read in a medical journal that a significant number of CFS patients exhibit POTS symptoms within 45 minutes of standing.  Another (Streeten, 1987) notes that CFS patients have a delayed drop in blood pressure  after 10 - 30 minutes of standing.  Another medical journal notes that POTS is 3 times more common in CFS patients than in controls, and that the pattern was of exceeding >120 bom within 3 minutes, rather than sustained increase of >30 bpm.  Vanderbuilt and other credible sources state the CFS and POTS are part of a spectrum.

There are other kinds of othostatic intolerance, so don't stress out about whether or not you have POTS.  You might have POTS!  You might have a different orthostatic intolerance. Remember that your quest is not to get POTS diagnosis, but to get a correct diagnosis. Please hang around here and update us as you go through the process of getting a diagnosis.  Even if you end up with a different diagnosis, please let us know.  You may help someone else who is struggling with the same pattern of symptoms you experience.

[Greyhound]

Thanks both. To answer some questions, my pulse rate goes up and down even if I'm completely still. Even if I'm lying completely relaxed on the bed with the HR monitor next to me, the rate goes up and down, up and down, whilst when I tired it on my partner I was very surprised to see it was steady. I was told by a doctor once that the healthier you are, the greater the difference between HR breathing in and HR breathing out. It still seems a bit random for that though.

I almost never drink caffeine and certainly haven't had any within the last week. Yesterday I tried some exercise lying down and my heart rate was high for about half an hour afterwards (not at the exercise rate but higher than it was before). Poor sleep, especially if I am woken up suddenly affects me terribly. My neighbours this morning woke me up at 4:45am with drunken shouting, signing, laughing, and banging around and that went on until about 6 so I'm probably now going to take at least a week to recover from that. I've just done another standing test so I can share the result here (I'll post below). I haven't thought about checking with regard to mealtimes.

I know my quest is not to get a POTS diagnosis I think I'm just desperate for answers after so long it feels great to maybe have found an answer but that it's so variable makes me think 'yes, this is the answer!...oh wait, no it's not'. If I get a different diagnosis I'll definitely let people know  

Today's test:

Lying down: 91/46, 86

Went up to 134 on standing.

After 1 minute standing: 115/86, 108

After 5 mins standing: 118/90, 116

After 10 mins standing: 121/86, 110

I feel like rubbish, I'm shaky, my heart's thumping (even when sitting down) I'm aching all over (particularly my arms) and I'm generally exhausted. I'm so angry with my neighbours for making me feel like this. It's set me back at least a week. I don't know what they're on. They're still shouting and singing now.

[StayAtHomeMom]

Good luck finding your answers. I hope you find them soon. I know how frustrating I can be thinking you are crazy when your body feels like it is malfunctioning.

[Greyhound]

Thanks. Looking forward to seeing my GP again on Thursday. Always frustrating to wait even a short time when you just want to get your life back on track ASAP.

[Greyhound]

My GP has referred me to cardiology. I'm still doing tests to compile some extra data because it fluctuates so much and today I found a weird pattern:

Lying: 95/55, 60

Standing 2 mins: 118/83, 74

Standing 5 mins: 116/83, 75

Standing 10 mins: 112/84, 89

So, the HR increases by 29 (not quite POTS) but what's with the blood pressure? It goes from low to pre-high. Does anyone have any experience with this/pointers for me, please?

I'm having a migraine at the moment so maybe it has something to do with that?

Everything's so variable, I can't see any pattern to it.

[BuffRockChick]

Read about hyperandrenergic subtype of POTS, also called "hyperPOTS".  It's a likely explanation for increase in blood pressure upon standing.  It's also associated with headache, irritability, and anxiety.

Glad you have cardiology appointment!  I hope you get answers!

[StayAtHomeMom]

My hr will vary daily and my heart rate doesn't always go up the 30 points, sometimes it is only 20. My bp doesn't change a whole lot usually. Your numbers kind of remind me of my son's.  His bp does the weird change almost everytime. His hr shoots really high normally though, at least 50. So far no official diagnosis for him. Appts are on hold til I get my vehicle back up and running. Glad you got a cardiologist appt.

[Greyhound]

Thanks both

I've been looking at stuff about hyperPOTS and I do get a lot of adrenaline that's nothing to do with stress or anxiety. I sometimes get it when doing the stand tests but it doesn't always happen. When I was at work I could have hours and hours or even whole days where I felt like there was adrenaline going through me, yet the job isn't stressful. It's exhausting (the adrenaline feeling, not the job). The other day I was just sitting at the table writing something and my heart rate randomly went up to ~116, I think it was, and I had loads of adrenaline but I wasn't stressed or anxious about anything (although it feels similar, of course, but I know the difference between adrenaline from anxiety and random adrenaline). But I don't get it as much as it sounds like others do, from what I've read (sounds like people with hyperPOTS get adrenaline all the time when upright - sitting or standing).

The cold hands thing makes sense too - I've tried finding out in the past (to no avail) why I can be very hot and sweaty everywhere else but with cold hands. Maybe it's another piece in the puzzle.

I'm not sure about increased urinary output as such but I do have bladder problems that the doctors can't find a cause for and I think they're about ready to diagnose bladder pain syndrome.

As for migraines, yep, I get them. Tremors I get too but not as often as it sounds like others with hyperPOTS do. When I do get it, it's usually when I've been woken up suddenly (although I'm not shaking with any kind of 'shock' of being woken up) or have had to get up suddenly after waking up (e.g. if doorbell goes in the morning and I have to go straight to the door from bed). Sometimes I'll just wake up in the night shaking all over. Basically, it's more of a nighttime thing rather than an upright thing. It's like my whole body's shivering from the cold but I'm not cold, in fact I think it tends to coincide with the night sweats that I get.

[Greyhound]

Hello all,

Sorry I haven't been on here for a while but I've FINALLY seen a cardiologist and I'm really stressed because he seemed hopeless.

He didn't seem know know much about the condition. My main problem is fatigue but he said that fatigue isn't a big part of PoTS (everything I've read says that it is) and he said that I wasn't fainting (everything I've read says not everyone with PoTS does; I do get dizzy/'feeling faint' moments though).

I've been managing my symptoms by sitting down as much as possible, including using a mobility scooter and a manual wheelchair; most of these last few months the manual wheelchair has been a reasonable off-the-shelf one but it still took too much energy to move it and I was getting so desperate to do more and to get back to work as soon as I have a diagnosis, I've got a rigid active chair which rolls like a dream. It's this chair I went to the appointment in. The doctor didn't seem to get the whole idea that I seemed energetic and alert because I WAS SITTING DOWN.

'You don't seem fatigued, you seem quite lively.'
Because I've been sitting down.

'I saw you wheel yourself in easily.'
Yes, I'm not feeling bad right now because I'm sitting down.

'You don't seem to have a problem thinking of your words.'
Yes, I'm not experiencing brain fog at the moment because I'm not fatigued because I'm SITTING DOWN.

Might as well talk to a brick wall

Also, he was looking at his phone screen half the time I was talking to him. He MIGHT have been looking stuff up, I don't know. I thought they generally used the desktop computers for that.

Over the last six months I've collected heart rate and blood pressure readings doing active stand tests at home. He BARELY BOTHERED TO LOOK AT THEM. But he asked me whether the the index cards they were written on had come from the library (as if I'd nicked them or something (I'd told him I work in a library)).
'They look like they're from the library.'
'No, we don't use them.'
He was more interested in the cards themselves rather than any of the results I'd written on them.

Then he listened to my heart whilst lying down, got me to stand up and listened to my heart and then did one brief little blood pressure test. That was all.

'Your heart rate went remarkably high and then came down again.'
'It will start going up again over ten minutes.'
He didn't care.

He also asked: 'Do you drink?'
'Very little.' (Generally when people say this they mean alcohol.)
'No, do you drink water?'
Being pretty fed up by now, I actually said 'well, of course I drink water.'
He didn't ask me how much - just asked if I drank water.

He didn't seem to believe me at all but he said he'll order a Tilt Table Test. I can only hope I'm symptomatic at the time.

Now I have to wait several more weeks.

I'm feeling so desperate and frustrated. I NEED to get on with my life. I NEED to get back to work (I've been off nearly six months now). I DESPERATELY NEED some kind of diagnosis.

So that's my update 

[MomtoGiuliana]

So sorry for your bad experience which sounds a lot like my first experience with a GP and a cardiologist before I finally found a specialist who knew about POTS.

Yes POTS does cause fatigue which can be severe (mine was for a time).  I never fainted--and many POTS patients do not faint.  Unfortunately there are doctors who have not encountered a patient with POTS and are not familiar with the symptoms.  My GP still asks me when the last time was that I fainted.  Like that is a measure of how well recovered I am.  It's just that she is not familiar w POTS -- which is now OK since I have a specialist who is!

Have you looked at this list to see if any of these specialists are near you:

https://www.dinet.org/physicians/

[yogini]

Yes, it sounds like a doctor who's experienced in treating dysautonomia would be better able to help you.

 

[Greyhound]

Thanks both. Well, I've now done the test! I'll get the result in the post - the people doing the test were only allowed to record the readings and pass them to the doctor.

My heart rate shot up straight away, went down again and then rose again, just as I'm used to when doing standing tests. In fact I even told them that we must be around 8 minutes into the test now and they said yes.

I'm surprised I didn't faint, though it felt like I was heading towards fainting right near the end. I know you said that now everyone with PoTS faints but I thought I would after standing up for 40 mins (I've come close before).

I now feel exhausted and I still have a hint of pins and needles in my hands even though the test finished an hour and a half ago! I even got a kind of pins and needles in my nose afterwards when the blood was rushing back - that was an experience!

I'm so relieved they were able (as far as I'm aware) to observed it happening. Just got to wait for the letter now. Can't wait to know what my measurements were!

I've just posted this in another thread of mine but I wanted to update here because ages ago I said I would when someone asked me to report back so people can use it as a reference when searching for info in the future.

[Sam123]

@Greyhound Thanks for the update. I have been reading your status and your symptoms are quite similar to mine. Im eager to see what are your results. Of course, I hope not POTS. Please keep update..