lauralulu

Think I know why... my BP monitor would read Error many times when I was standing up, but then would read when I sat down. It's because when I was standing up my pulse was so thready that the machine couldn't pick it up, so couldn't get a pulse or BP reading, then when sitting it was a stronger pulse and would get a reading. Sometimes when I'm standing I can't even palpate a pulse myself because it's so faint and thready.

I did wonder if that was why!

Well, since I've been reading about POTS I've been trying a few lifestyle modifications here and there, even though I'm not yet diagnosed and not sure if I do have it, although it does seem I might.

I used to have a hot soak every night in the bath- because I suffer with a lot of neck pain/knots, upper back stiffness/pain and tension headaches. I felt like the bath helped.

I always used to get this weird symptom in the bath, it felt sorta like my chest had to 'cave in' and push my breath out in what felt an unnatural way, almost like an involuntary muscle spasm in my torso that would force me to breathe out whilst pulling in my diaphragm- I've had the feeling other places than the bath but would most often get it in the bath... anyways, I digress.

I have noticed that since I stopped having a bath at night, I feel more 'awake' in the morning (I put it like that because I've never been a morning person, but it has been better recently). It's strange because I always felt like the bath was my treat, my luxury, yet going without seems to make me feel better...

I have a BP monitor that gives me errors certain times when standing, but because of the error I have no dea what my hr was at the time!

Thanks!

This is interesting to know because I'm in the process of monitering my own heart rate day to day, because I suspect I may have POTS and am currently seeing my GP about my symptoms- am not sure where I'll be heading next- referral to a local cardiologist perhaps. I have found variations like this- one day my hr was in the 120's when I was moving from room to room, the next day it was above 130 doing the same thing, the day after that it was about 100 when standing and one day was even dropping down to 85-95, but then climbing up again slightly. I couldn't be sure if this was 'normal' for POTS or what was really going on...

I have also noticed sometimes I feel worse when just sitting (I feel as if my heart is starting to pound) and better if I am moving around. And on days when my hr has been higher, I've had my strange 'tired but wired' feeling. I was always so puzzled by that but now it kind of makes more sense, having seen how my hr was elevated just doing simple things.

If I am understanding you correctly walking around varies 120-130 and standing from 85-100. Those are normal ranges for the same activity (walking around and standing respectively). Today my rate was 80 as I stood still for about 20 minutes or more talking to a friend. At one point it even got to 75. As a comparison, on my TTT two weeks ago, standing still sent my heart rate to 120 in under 10 minutes. That is a big variation (80 to 120 while standing still). Why don't you do a poor man's TTT? Strap yourself to your heart monitor and lay still for 10 minutes, see what your HR is at the end. Slowly get up and stand absolutely still (no talking, gesturing, etc.) and take your HR at the end of minutes 10,20, and 30 (you can do it more often, but it's the same really). Ideally give the HR receiver to somebody else to record the values, so you don't freak yourself out and affect the readings. If your HR goes up by more than 30 bpm from laying to standing, then there is a pretty decent chance you have POTS. Don't do that if you have ever had syncopes, though.

Thanks, I have been doing this- often my hr has gone up by 30-40bpm, this is why I was getting confused at those times when it seemed more 'normal'. I was like- do I have it, don't I have it, what's going on? For example, after being supine with a hr of 85- most often when I've tested it's gone up to 112-120 thereabouts initially, but it didn't stay right up there- it tends to hover around 107-112, although there was one day when it was consistently above 125 whilst I was standing still for 10 mins. I've never fainted thankfully but sometimes feel 'shaky' when just standing still doing nothing, and get fidgety.

I myself have been doing this 'poor mans tilt table' in the mornings and at random times throughout the day, I have data now I can take to my GP and ask her to send me to someone who can do a TTT for me.

Incidentally, even scrabble is telling me I should do this, I played it with my boyfriend last night and I got three T's in a row! lol.

Good luck getting to the bottom of your symptoms M!

This is interesting to know because I'm in the process of monitering my own heart rate day to day, because I suspect I may have POTS and am currently seeing my GP about my symptoms- am not sure where I'll be heading next- referral to a local cardiologist perhaps. I have found variations like this- one day my hr was in the 120's when I was moving from room to room, the next day it was above 130 doing the same thing, the day after that it was about 100 when standing and one day was even dropping down to 85-95, but then climbing up again slightly. I couldn't be sure if this was 'normal' for POTS or what was really going on...

I have also noticed sometimes I feel worse when just sitting (I feel as if my heart is starting to pound) and better if I am moving around. And on days when my hr has been higher, I've had my strange 'tired but wired' feeling. I was always so puzzled by that but now it kind of makes more sense, having seen how my hr was elevated just doing simple things.

Have you ever been tested for diabetes insipidus? The constant thirst and overactive bladder make me wonder. Or even regular Diabetes? The diabetes insipidus is just people who lack the hormone that makes you retain water so you take the hormone in pill form. Are there any POTS specialists around you? Its crazy when you start to realize all the symptoms pots can cause. I didn't have full blown POTS until a few months ago but i think i had beginning symptoms long before that. I ran track and cross country and i remember reading about running with your hr in the 60-85% of your max zone and how you can't keep you hr in the anaerobic zone for longer then a few minutes yet, i'd run entire 5k races with my hr at or nearly at its maximum.

Wow, that's crazy! I haven't had any 'full blown' symptoms until recently but I was going out a lot, working hard, not getting much rest, and now I feel pretty much dreadful! I haven't been tested for DI but have heard about it and believe it or not, I asked my urologist if they could test me for it. He said no- because 'it is rare'.

Yes, that's the kind of 'health care' I am putting up with here!!

typically my hr is 100-120 resting and 140-180 standing. Dr.grubb said that the IST is what keeps my hr still so high at rest and the pots is why it rises >30bpm with standing as well as causing the other pots symptoms i have.

lauralulu- do you have a cardio to take all these results to? do you have other symptoms?

Hi- no I don't have any sort of specialist at the moment. I've been 'ill' for approx 8 years, with some times being better than others. The most apparent symptoms I've had are constant thirst, overactive bladder (which don't really go well together, haha!) and fatigue. Period problems (irregular, heavy and painful) and more recently feelings of weakness, shakyness and breathlessness.

I have many other things too that I've had for years, such as neck aches, back aches, headaches, migraine 'auras' and forgetfulness.

I'm only just starting to realise how all of these seemingly unrelated symptoms could in fact be linked together...

I'm hoping my GP will be sympathetic and refer me on to someone who could give me the right sort of tests.

How much does your HR change going from supine to standing?

Is that to me or prettyinpink? I'll answer anyway I took it the past few mornings, Wed it was 80-122, Thursday 74-117, today 77-122. It spikes up to the high number then tends to fall down between 105-114, though a few times I have seen it fall into the 90s, where it hovers around between 95 and 105.

This is an interesting thread! Glad you found a reason for it prettyinpink!

I'm not DX but wanted to respond anyway... this is based on the readings I've been taking with my watch to show my GP...

Supine: 70-80

Sitting: 85-97

Standing: 95-125 (but usually tends to hover more around 107 after the initial 'peak').

I was interested to notice though the other day, whilst sitting at college taking notes I started to feel 'funny' (dizzy, breathless, uncomfortable) so I looked at my watch and my hr had gone up to 125 just sitting- which seemed high for me personally. Since I've been monitering myself with the device I'd never seen a number that high just sitting so it was quite a surprise!

Do you have to have that doctor's approval in order to go to a POTS specialist? If not, just go to a doctor who specializes in POTS or go to a cardiologist. So sorry you are having frustration. I completely understand. I had 3 years of this! Good luck, hun.

Thanks, I feel like I'll need it!

I do need a referral I think if I want to go through the NHS, which I am going to try first. Not to worry though, I think I am worrying myself over bad past experience with my previous GP, who told me my severe period pains were "just PMS" and told me I was "just stressed". The GP I have now seems way more thorough and although the 'S' word did come up, I don't think she'd stick that label on me without checking other things first... I just hope she's willing to go further than blood tests because a lot of GPs seem to take your blood and if that comes back okay, they just assume everything is and send you away feeling like a moron!

I've been monitering my own hr with my watch and this morning it went from 77 resting supine to 120 standing (and I've had similar results the previous couple of days too, as well as with random sitting to standing tests) so I can see with my own eyes something is going on. It does go down fairly rapidly while I'm still standing, but tends to hover around 100-112 then as soon as I sit back down, goes down to around 80. I'm writing these results down to take to my GP when I go back for my bloodwork results on Wednesday next week.

Thanks Flop for the explanations, it's interesting!

hi

i would definately not leave it. i did, because whenever i went to the docs and had chest pain they would take my vital sitting or laying down. and surprise nothing wrong.

my heart rate went up to 185 when i was in hospital, and sitting was 80.

good luck tell us how you get on.

emma.

xxx

Thank you, I will do. It's so nice to have some sympathy and understanding, after many years of Drs looking at me like I was making it all up for attention!! xx

Thanks guys! I'm definitely going to ask for that referral, and take in my results from my own watch.

Oh, I seeeee *blush* I thought it was to see the heart rate fluctuations! lol.

Silly me...

So, I went to the Drs for my ECG. I asked to have it taken standing up as well as laying down. There were problems with the stickers/leads- a couple were half peeled off, so the nurse was struggling to get it working... I was standing right by the monitor though and it was displaying a heart rate of 180bpm. I don't know if that's right or if the leads hanging off were causing it to malfunction, because despite it printing off a page, when she went and showed it to the Dr, the Dr said she couldn't analyse that one, but the other one was normal. Well YEAH. I was laying down!!

I'm annoyed and frustrated. I have my own heart rate watch so I am going to take readings from it this week, write them down, take them to the GP and say look, this is happening, now I want you to refer me on to someone who can run me some tests and tell me why/what this is. (I haven't mentioned POTS because I don't want it to sound like I am chasing a diagnosis- I did this once before because I had such incredibly horrendous period pains that I was sure I had endometriosis or fibroids or something wrong inside so I made the GP refer me to a gynae, I had a laparoscopy, and it turns out everything is normal inside... I fear that the GP will think I am a hypochondriac if it seems like I am chasing another diagnosis for something I may not have).

When I got home I tested my own hr though and it was 80 laying down, rose to 122 immediately as I stood, after 1 min it was 111, 3 mins 110, 5 mins 112... and during the standing it would fluctuate between 95 and 114, often hovering around 102-105.

I'm so annoyed that the ECG didn't pick it up, I felt like I'd be taken more seriously if the Drs equipment could show what I am finding when I test myself!!

I haven't read all the posts, but I wanted to chime in that in some cases, such as anemia, POTS can be a symptom, not the primary disease. Years before I was sick enough to pursue a diagnosis, I had "temporary" POTS symptoms because I was peri-menopausal and anemic. The POTS symptoms abated back then when the other conditions improved.

My opinion is that all possible causes of POTS symptoms should be pursued first , before just assuming POTS as a stand-alone illness.

Oh, agreed! I'm thankfully having full blood work up done at my GPs surgery next week, to test for anemia and thyroid problems. I'm wondering about POTS because, whenever I've been ill, I've had blood work done as a first resort and it so far it has always come back A-okay (apart from last year when I had a "type of glandular fever infection" and hepatitis). The only problem with that has been they've tended to just send me home with a clean bill of health and a bit of a sceptical frown, as if I'm worrying about nothing, when I know that ever since 2001, I just haven't felt like the person I used to be!

Thanks for the reply about the TT Flop! I was wondering about that. If everything comes back fine with my bloodwork this time, I might just muster up my courage ask for one because it would be good to know one way or another.

Hi Laura,

This isn't an immediate reply to your last question, but I just wondered, are you based in the UK? A few other POTS patients and I had a really hard time getting diagnosed in the UK and were dismissed countless times as hyperchondriacs. I have the email addresses of some POTS specialist Professors in the UK who you could discuss your symptoms with over email. They are aware that it is sometimes pointless going through some GPs because they don't naturally diagnose dysautonomia as it is so rare.

Janey

WOW Janey, thank you! Yes, I'm in the UK and have already had issues with my last GP dismissing me with that label due to me menstrual irregularities and pain it's actually made me afraid of Drs and tests because I think they're all going to label me or tell me it's all in my head just because THEY haven't found what is wrong!!

Discussion of symptoms over email, wow, would they really do that?!! That's amazing! It'd be ideal really, I've been so worried about the whole issue of having a diagnosis missed because it's difficult or rare. Thanks again, I'd really appreciate the emails! :-)

I have another question, does the increased heart rate have to stay consistently above 100 when standing for it to be POTS? As mine isn't always... it's dropped to the 80s and 90s a few times and once even to the 60s! and even when it is above 100, the highest it's been when standing was 132 and from what I've read of POTS many people have much higher! I guess I'm just wondering HOW they diagnose it, is it based mostly on the +30bpm criteria and how long does one have to be at that increased level of heart rate? I don't want to be barking up the wrong tree... :/

I know you can never KNOW for sure if you have something until you get an official diagnosis but I want to be as sure as I can be before asking to see a specialist. That way I'll have the confidence to mention it and ask for the required tests.

If I was going on the symptoms alone I would be confident because there are so many symptoms I have that POTS would explain, but I'm afraid it could be something else I don't know of, and that I might look stupid asking to see a specialist and then discovering I was making the wrong assumptions!!

I can get dizzy at any time - standing is more likely, as is sitting but ive got dizzy in the morning while in bed after a night of sleep. Dr Stewart says that in many cases the circulatory irregularities in POTS are present at all times and are just made more obvious by standing.

I get this too sometimes (dizziness even when laying down) but I'm undiagnosed so who knows why. One thing I have noticed though since monitering myself is my blood pressure in a morning is often pretty low, so perhaps that's why. What that Dr Stewart says sounds sensible, I mean when you think about how different we all are just on the surface, it makes sense that we can present different and 'unusual' symptoms depending on how one's own nervous system is functioning!

Yeah those symptoms seem pretty similar to mine so its certainly worth going to see a POTS dysautonomia specialist. Silent migraines are a daily problem for me at times, visual snow as well.

My blood pressure doesnt drop - infact mine increases when I stand. Despite this I get dizzy and have fainted a few times.

Aww, I just noticed your post on constant dizziness and thought hmm, that's how I am feeling lately! I've never fainted though which is why when I first heard about this I thought- that can't be me- but then when I read further around it, I was shocked at how many of my 'mystery symptoms' it could explain.

I'm in the UK and have no idea how to go about getting referred to a specialist, but believe me I'm determined to find out!! I've been 'fobbed off' by Drs for YEARS andnow I feel like I may finally be 'on to' something, I am not taking it lying down!! (oh ho ho, pun intended lol).

I think you should specifically find a dysautonomia/pots doc to do a one-time diagnosis with treatment options. To me you seem to fit it all, but it's good to have the diagnosis and a doctor to call in case of emergency. Just make sure it's a POTS doc, or else you may get the run-around for years, even if you fit the criteria =) Dysautonomia docs say that even a negative TTT can still be POTS/Dysautonomia because it depends on how the doctor interprets the data, and a lot of them don't know enough about all the criteria to make a correct diagnosis (even if it may seem simple to us ;p). My bp dropped to 40/20 for a while during my TTT and my doctor at the time still didn't think I had it---but when I sent the results to Karen Friday at Stanford, she was apalled at that doc's opinion and said it's all too common for docs to not believe in autonomic problems and just point to anxiety or other things.

Anywho, I definitely think a TTT is worth it! I hope you find a great doc! Completely worth it =)

Thanks for the advice and speedy reply! :-)

Hi all,

I've suffered with fatigue and plenty of other problems ever since I was ill in 2001 with a virus- I've always felt like I never fully recovered. Have had loads of tests and never got to bottom of it, ended up changing Drs because he started treating me like a hypochondriac, saying "Laura, you're healthy!" as if it's all in my head.

A friend on another forum recently saw my symptoms and told me about POTS. At first I discounted it because I've never had any problem with standing up, but then when I read through it and saw all the other symptoms, I thought perhaps she could be right, so I bought myself a blood pressure and heart rate checker, just to give me confidence to go to the Drs with some evidence if needs be. Now, my heart rates weren't as high as what many POTSies get, but I still think they may be higher than 'normal'.

The symptoms I've experienced are:

ALWYAYS thirsty, and if I can't get a drink for half an hour- or even worse an hour, I feel as if I'm dehydrated. (Been tested umpteen [very many] times for diabetes thanks to this one!)

Seen a uro who diagnosed with me 'overactive bladder' because I pee about 20 times a day, I can't comfortably hold much more than 100mls as my bladder spasms as if it is full, urging me to empty it!

Menstrual problems- I get dreadful PMS, I feel weak, dizzy, my chest feels tighter and my heart feels like it's pounding more. I get anxious around my periods. I also have a strange cycle (about 40 days!) and in the past had such severe pains not during, but leading up to it, that I actually underwent a laparoscopy because I thought I had endometriosis!

I used to vomit and get flu-like symptoms the week before a particularly heavy period, and the pain was like nothing in the world, the closest I can describe it is that it was like having gastroenteritis from my pubic bone right up to under my breat bone. (Going on the pill incidentally cleared this up, thank GOD! Although I am not currently on it because I get migraines and the progesterone only one doesn't suit me at all).

Migraines- often 'silent' (i.e. just the aura)

I get AWFUL tension headaches and when I do I feel like I could have meningitis because I can't stand lights and my neck is soooo painful. I get such trouble with neck tension and tension headaches that I HAVE TO have a massage every 6 weeks, if I don't, I'm ill with it!

I also have:

Low tolerance of stress- I seem to tire more easily, get more 'worked up'.

Much less fit- even after trying to get fitter again

Migraine auras and strange fuzzy vision at times when very tired. (Like looking at a snowy TV for a few moments when getting up). Or I'll see dazzling little lights that 'dance' for a few seconds in a kaleidoscope like pattern.

Vision has on rare occasion gone yellow when I've stood up, accompanied with a dizzy feeling, close to fainting.

Have a number of times felt faint when I've stood up and had to 'hold on' to something to steady myself until feeling passes.

Gastro-intestinal problems (bloating, reflux, wind, finding certain things hard to digest, IBS type symtoms come and go).

Headaches- often on left side. Have always suffered frequent headaches.

Muscle aches and joint pains- particularly backache and neckache and aching elbow joints.

Knee problems when walking further than normal, particularly downstairs or hills.

Dizziness- usually worse in morning- recently (this year) head often feels 'swimmy' when I'm just sitting.

Have had 'head rush' symptoms, sometimes coming on when sitting down! It's like my brain is a turbo charged helium balloon trying to rush out! Very weird.

Occasional knife like pains on left hand side of body starting at pelvis/ovary sort of area and going up to breast.

Anxious at times for no apparent reason, often related to menstrual cycle. (Feeling 'jittery'- like I can't relax).

Very forgetful, bad short term memory.

Insomnia at times despite being very tired. Or sometimes I feel like I've slept like a log but wake still feeling exhausted.

Occasional feeling of breathlessness, like something is pressing on my chest, constricting breathing.

Often whilst laying in the bath, a strange sensation of breath being 'pushed out' of body- a strange spasm in chest and/or solar plexus region, forcing breath out in what feels an unnatural way.

Strange feelings when very tired in legs (often happens during plane journeys)- the feeling is like the feeling you get when you need to stretch, which makes me feel the need to move my legs to relieve the feeling, but it doesn't really relieve it.

Recently (this year) I have had the same feeling in upper body, which makes me fidget in bed.

Now, I know no one here is my Dr and so you can't you know, medically advise me etc but I have seen my Dr and I am having some blood tests and an ECG next week, but I was wondering, based on my symptoms (and the heart rate checks I'm about to post) do you think it's worth asking my Dr (or cardiologist as I may be referred to one depending on my blood test results, though I'm not expecting them to show anything as I've had loads!) about POTS? I don't want to seem like I'm some hypochondriac symptom surfer but I've suffered with this 'mystery ailment' for so long and if there's even a chance it could be POTS, I want to be tested properly! Not sent packing with a clean bill of health just because they can't FIND anything!

Here's my heart rates- I've done this first thing every morning all week. The first value underneath each day is the laying down in bed btw. BP followed by HR.

Monday

93/53; 63

Standing 1 min: 123/80; 121

5 mins 114/77; 101

10 mins 106/73; 102

Tuesday

85/56; 79

Standing 1 min: 103/72; 114

5 mins 139/101; 103

10 mins 111/79; 100

Wednesday

(day after having had a migraine that started 11pm)

93/74; 79

Standing 1 min: 109/81; 132

5 mins 136/76; 109

10 mins 147/80; 99

Thursday

118/67; 69

Standing 3 mins: 95/62; 125

Friday

90/61; 73

Standing 1 minute: 96/78; 109

3 mins: 103/73; 94

5 mins: 114/70; 113

I'd appreciate any input as to whether you think it's worth requesting a tilt table test, depending of course what my blood results show.

Thanks,

Laura :-)