Greyhound

I get this too.

(I'm not yet diagnosed but am expecting to be told my tilt table test result soon and I believe it was positive.)

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.

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 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!

Great advice! Many thanks!

After seven months of delays and errors, I have a TT test tomorrow. It's at 1:30 - around the time of day I'm at my best, despite my asking them more than once for a morning appointment so the symptoms definitely show. I suspect it will be a waste of time  

It's at Queen Elizabeth Hospital, Birmingham (UK). I'm not to eat for four hours beforehand and I will be tilted for up to 40 minutes. I hope I'm symptomatic at the time, as in the mornings I know I definitely fulfill the criteria, but I don't hold out much hope at 1:30. I've been waiting so long, I'm desperate for a diagnosis and treatment.

I'll let you know how it goes.

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 

Ah, that sounds quicker than I thought! I think I might get to see a POTS specialist (it's at the Queen Elizabeth Hospital in Birmingham, UK), although my first appointment is with general cardiology.

Still interested in hearing others' experiences, especially from those with hyperPOTS. Just want to get a general idea of the average.

Thanks

This is probably a really stupid question, but supposing I was diagnosed with POTS tomorrow (I haven't even got my appointment letter yet, but just supposing) and I was started on some kind or treatment straight away, how long should I expect it to take before I see significant improvement (particularly fatigue levels, as that's my biggest problem)? If it helps, I'm thinking it might be hyperPOTS. Is it likely to be months? A year? Three years? Or does it vary so much it's not even helpful giving a guideline? What are people's experiences, please?

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.

Please note I'm not yet diagnosed with anything but I suspect POTS.

I sometimes get this. It seems to come in phases but I can't work out what triggers it (the weather/room can be hot or cold - it doesn't seem to matter). It's more common shortly before and during my period but that's not the only time it will happen. It's horrible - I wake up absolutely soaked. I know how you feel  

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.

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.

Please note I haven't been diagnosed with anything yet. When I went off work six weeks ago, I was so fatigued and felt so ill standing and walking that I decided to get a secondhand mobility scooter off eBay. Turned out to be a great decision. Got so fed up of being in the flat and basically it was my way of carrying on as 'normally' as possible. I've since bought a folding manual chair for times when it's too much energy to get the scooter out compared with the energy saved by using it or when a scooter is not practical (e.g on public transport, in smaller spaces). I can be pushed by my partner and indoors (e.g. a shopping centre) I can do some pushing myself. It's all about keeping on going as much as possible.

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.

It's great to be able to talk to someone who understands.

The library in general isn't great for wheelchairs in several places. Before I even thought I might ever need a wheelchair, I pointed this out more than once but in their eyes it's accessible (you just have to go convoluted routes and shove chairs and things out your way to get where you want, which is still not good). If I kept the scooter nearby, I would have to keep standing up to get to it. That means for every enquiry my pulse would still go up to 110-140 twice just getting to it and back again afterwards. I'm guessing this will not help the fatigue.

Whilst I've been off, colleagues texted me to see how I was doing, which is nice, but when I told them that I'd got a mobility scooter I don't think they got why, even when I'd told them I can't walk or stand for long. When it comes to using any mobility aid, I just think the question to ask oneself is: 'Will using it make life better for me than not using it?' If the answer is yes, use it. In my case it's got me out the house when I wouldn't have been able to go out before and I really think it's the only answer available at the moment to get me back to work.

Re keeping legs elevated: I really don't know yet. I ought to investigate. Maybe it's why my legs always get tired even sitting at my desk or driving. Duh. Can't believe I didn't think of that before. Like really, even though I've been reading loads about POTS. My brain's not working properly at the moment lol

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.

Thanks so much for your reply. I work in a college library and there's a lot to do that involves walking round, such as getting up to check stock, helping students find books, journals etc. It doesn't sounds like much but there's a lot of getting up, sitting down, getting up again, moving around, etc. All I can say is that I get very fatigued doing it. Trust me, I tried to continue for as long as I could. Standing up seems to make me feel the worst and I can't do it for long at all. Also things like just getting to and from the car park are very fatiguing for me right now but I don't know whether that's because I'm upright or because I just can't do much movement at all so I wondered what others find with themselves in this respect.

In terms of space, the workroom and parts of the library, especially around the enquiry counter/issue desk are really tight and can't easily be moved around at all.

I'm meeting with my manager and HR on Monday and we're going to discuss accommodations.

I really don't know what to do. I need to go back to work, possibly as early as next week. Should I order myself a rigid wheelchair and hope I have enough energy to push it or should I get a powerchair? Do people here have enough energy as long as they're sitting down or is it still a struggle? I keep questioning myself: Should I use a manual wheelchair to stop deconditioning completely or should I use a powerchair to conserve energy? What are other people's experiences?

I'm feeling lost and desperate.

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.

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?

I'm not diagnosed with anything yet but I think I might have POTS. When my symptoms are particularly bad I can shake all over a bit like shivering but I'm not cold. This can happen lying down or standing up.

Does anyone here use an ultralightweight 'active'/rigid wheelchair for POTS? I've searched the forum and can see that some people use a wheelchair but need to be pushed. I have a folding wheelchair which is 12kg but can't propel myself far, partly because of the weight and wheel and backrest position and partly, I think, because the frame flexes a lot, so I need to be pushed most of the time, even indoors. I need to get back to work as soon as possible but really can't walk or stand for long at all without getting exhausted. I also have a mobility scooter that I bought secondhand off eBay which is fantastic but will probably be too cumbersome to manoeuvre around at work. I could get a powerchair but they're very heavy to transport and I wouldn't be able to take it anywhere but work.

I'm wondering whether anyone else here uses an ultralightweight 'active'/rigid wheelchair to propel themselves around to help their POTS or would even that be too much effort?

I feel stupid asking because it seems that lots of people with POTS manage without a wheelchair, even if they faint a lot, which I don't. But at the moment I would not be able to return to work without some kind of wheelchair and I'm desperate to return.

Thanks  Grateful to be here. I've been feeling so lonely and lost since going off work about five weeks ago with fatigue.

I'm not diagnosed (only recently started investigating) but this morning my HR jumped around 30-40 (can't remember now) after sneezing. I was very surprised.

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.