Any Cardiologists or knowledgable, sympathetic GP's about? Scary tachycardia over 200 bpm

[WoodYouBeHappy]

Disclaimer: I have been diagnosed with severe ME/CFS in the last few years, retired on ill health and now housebound. Only 40!

Now ignore that bit.

My main symptoms (apart from pain) are debilitating vertigo, orthostatic intolerance and tachycardia. I only realised I was tachycardic when I bought a POLAR monitor last year - identical to the ones that are used -but broken- in the ME/CFS service. I showed my HR's to the ME/CFS Service and they were not concerned that it was reaching 150 on climbing stairs or on my 5 minute physio walk.

Now I have noticed that my chest strap monitor keeps recording spikes of over 200 bpm and often dips very low. I thought it was faulty (& changed the battery) but have tried it on DH and it displays a very regular healthy HR.

Right from the flu virus (that triggered ME?) I have been unable to pick things off the floor, go from lying to standing, or be active, without severe disequilibrium. Recently have been very breathless too.

So neither my GP or the ME/CFS clinic seem concerned about this and have not been interested in screening for POTS. I have had a rough winter and keep dragging myself up from my bed to wander about a bit in the home to see if there's any improvement.

Last week I managed to get downstairs (going up is the problem) and sit outside the back door on a recliner in the sun. Yay! Only I realised I felt quite dizzy and that I had tachycardia of mainly 120 - 239 bpm....whilst sitting resting happily in the sun . I expected it to drop (am happiest in the garden) but it didn't seem to be slowing at all.

I tried slow walking and even went inside and meditated calmly on the sofa to see if I could bring it down. Nothing. I then went upstairs to lie in bed to see if this helped. Still ridiculously high and had been for nearly two and a half hours. I was very close to calling DH and thinking about A&E, when I googled it and some advice said to hold your breath for a minute. I did and it began to drop and gradually returned to normal. Well, normal for me

Now, what happened here?!! Anything over 200 bpm is normally just brief spikes for me, here it was mainly between 140-230 for two hours, 30 mins. I was not anxious (have been tachycardic for ages now) and had had quite a good day.

What I am anxious about is seeing my GP & ME/CFS bod and asking again about POTS, tachycardia and a cardiologist referral! Do they think this is anxiety? Any top tips to actually see a cardiologist this time? I would really like to avoid any eye-rolling when I pop up again with HR readings

Surely this is something that should be investigated? Or am I always to languish in the deep bucket of an ME/CFS diagnosis No improvement at all in my recovery, so I'm looking for clues as to why not.

Wood purple feet is just the blood pooling when you're upright - in a "normal" person, 60% of your blood falls to your legs when you stand up (cos gravity) - that's why you get a bit light headed if you stand too quickly, the brain messages aren't quite as instant as the brain would like.

With PoTS (especially if you also have Hypermobility Ehlers Danlos - which is stretchy connective tissue for lurkers, everything which isn't bone or muscle) the signals to regulate the blood by increasing heart rate/increasing blood pressure don't get through very well (with H-EDS the veins can be a bit stretchy as well) so HR goes up, BP doesn't, brain triggers AUTOMATIC FAILSAFE and you faint, getting the body horizontal, and getting blood back to the brain. Saw a video at a conference of a woman with PoTS wired up to a HR monitor, and you saw the numbers whizzing up as she stood up, and going even higher as she lifted her arms in the air. The Dr stopped it once she hit 200 and made her lie back down .

massive simplification obviously, but you get the gist

So pleased I pushed on through and used some energy to type this thread. It's really helped to get a different perspective and new information. I've had purple feet for a couple of years in the shower so have spent quite a bit of time researching. It wasn't the purple feet really, but the not being able to stand for long was a bastard

Thank you Visions I feel a bit more knowledgeable now. Just have to get a Cardiology referral from GP. None of those dysautonomia/POTS specialists are near me, so will go for the one recommended by my clinic. and might have to dig deep for private if it's another 1 year wait

Did the poor man's tilt test again yesterday, courtesy of Dr Bell's instructions for an OI test. Glad DH was here.

Got lots of figures but the bit I've seen many times before is that I went from 85 bpm horizontal to 125 bpm while standing. Coo, I did not feel well at all and it became increasingly unpleasant. In fact at 7 and a half minutes I was on the point of passing out and fell back to the sofa. We could not get a BP reading for all of the time I was standing either, so I guess it must have been too low. It kicked back in ok after 2 and a half minutes horizontal recovery time.

So what does that mean? Mr POTS specialist man on YouTube up thread says your BP shouldn't drop too much if you have POTS.

Maybe it's not that...but something else?... I have really had enough of being ill now.

Hullo everyone,

We're just going to move this to General Health at the request of the OP.

Thank you Kate

I have gained so much support and information from MN over the years, I feel it's only fair to make sure this information does not disappear in Chat. I do hope it's helping others.

GP has agreed my HR is unusually high -when standing- and I'm off for an ECG and then a cardiologist appointment.

Although what a resting ECG will find I don't know, as it's standing up and moving about which is a problem

Still, step in the right direction. Just lots of waiting now. Thanks all

Glad things are moving along, OP! I hope you don't mind if I pop in here for a question...

MyVisions, I'm curious about your saying the 'poor man's tilt test' thing doesn't work everytime? After trying to get a tilt test for 2 years, I finally had one recently and they said my HR was variable, but didn't look like POTS.

I had done the poor man's version a year ago at home, and repeated it 3 times, and got HR increases at 10 minutes ranging from 38 to 49bpm up, and continuing to increase the longer I stood. I did it again after my negative tilt test, and this time only 2 of 4 trials met the diagnostic criteria: HR increases of 38, 30 (which had dropped from the 5 minute measure - that never happened before), and 14 and 13! so like, nothing, for those last ones. I didn't feel faint at all.

This summer I got the okay from my GP to increase my salt intake (from less than 2g salt/day to 3-5g). So now I'm confused - I'm pretty sure I'll get told I don't have POTS given the negative tilt test (although I don't see the consultant for another month), but I also feel like my home-measures have improved significantly.

So, could the increased salt have helped? But my BP has gone up too. I'm seeing the GP soon to see if he's concerned, but it looks to me like it's nudged from the mid/high end of normal to high normal/over normal. So I've got conflicting worries: is the salt bad for me? And if they tell me to stop it, will I got back to feeling how I did last spring? Because I feel significantly better than I did before increasing salt. I also noticed the high BP measurements coincided with the lack of HR rise (and the +38 trial had just as low BP as last year).

I've been applying other techniques from the POTS site for the last 2 years, which also helped, but it appears the salt has made another difference. Yet it could be wishful thinking, and with a negative tilt test, perhaps I don't have POTS after all and it'd be dangerous to continue with higher salt.

Anyway, sorry, it appears a question got lost in my blathering on. But I guess I'm wondering if the 'poor man's tilt test' doesn't always show the result, can that be true of the full-scale tilt table, too? And perhaps secondarily, could I have done enough coping measures to obliterate the HR rise, or is that just still true of POTS all the time no matter what you do?

Hey, welcome Murmuration. Apologies, I've just remembered we were chatting about your HR on the other thread and I didn't get back and reply to you. Oops. Brain fade.

I fear that you may be writing my post of the future here, so am very interested in any answers. @MyVisionsComeFromSoup had some excellent information and said as POTS can be variable, to make sure you have your Tilt Table Test on a bad day. I'm not quite sure how to do that but I guess the opposite of helpful, so cut out salt and extra fluids. I also read on a US site (? can't find it ?) to stop taking any SSRI's for 2 weeks beforehand. Not sure I fancy that......

It sounds to me (with all my cardiology expertise ) that you have improved your POTS yourself. I was also thinking of going down this route, as like you I've been fighting forever for a cardiology referral for POTS. Now I might have one coming up, curing myself in the next month wouldn't really be in my best interests

Thanks, wood - no worries, I can barely keep up with the internet myself :)

Woah, yeah, stop taking SSRI's sounds like not best idea, no matter what you're taking them for. I had asked if I needed to stop the bupropion, but it seems so little known here that no one knew. And it's not a simple matter - it takes 2 weeks to wean off, which I'd need to book off work plus because I can't function without it. I know this as I tried to go off it when pregnant (has a higher miscarriage rate), and I could barely walk down a corridor only partway into the first week. GP and I quickly decided the embryo would be in more danger from my body without it than from the medicine!

Oh well, I suppose we'll see what happens. I am feeling better than I have anytime in the last two years, so that's a good thing.

I can't find that US site I was talking about, but I have found this. I'm pretty sure you will have read this stuff a thousand times over

^Why do people with POTS seem to have random times when they feel a lot worse or better without any reason?

"Many patients with POTS may be very sensitive to mild variations in environmental factors such as heat and humidity which tends to aggravate POTS symptoms. POTS patients may also be very sensitive to dehydration or the effects of drinking alcohol or caffeinated beverages. Many young women with POTS will find their symptoms worsen during times of menstruation. Clearly POTS patients are much more sensitive to modest changes in their physical condition and the environment".^

my.clevelandclinic.org/services/heart/patient-education/webchats/autonomic-disorders/1696_understanding-pots-syncope-and-other-autonomic-disorders

Sorry, don't know how to shorten links

So pleased you are feeling much better. I seem to feel much better in the Spring/Summer and I don't know why. (Need a winter cardiology assessment really!). Maybe I am more hydrated.

I am cautious about my Cardiology assessment. Like you, I think they won't find the POTS levels on the day and I'll be thrown out of yet another department. And if anyone mentions the word deconditioned again to me I shall probably throw myself to the floor and have a little wobbly tantrum

because I know that they are probably right

Sorry, been away (playing nurse to DD who has been having a bad patch).

IME, when DD is having a better spell, her HR is much more normal (ie with no significant rises on standing), a bad patch like at the moment, her HR is all over the place. So, yes, we've had "poor mans" readings which are normal, followed by ones which are potsey.

In her TT, she showed a mixture of vasovagal syncope and PoTS, but from memory, she didn't show PotS HR readings till they gave her the spray. That was enough to get the diagnosis though.

Re prep for a tilt test, yes, if you can stand it, reducing the self help stuff (extra water, salt) can maybe emphasise a bad spell which can be helpful, but reducing anything else without medical advice wouldn't be good . If you find doing too much makes your HR rise/you feel dreadful, maybe have a busy couple of days before the tilt?

The point of extra salt is to raise BP, so higher readings should be expected (same as some POTS medications like midodrine and fludrocortisone, although through different mechanisms), so unless there's any other medical reason why raised BP isn't good for you, then it's not a problem in itself. Increased blood volume/increased BP will probably have a good effect on how you feel murmuration if it is PoTS you have. So then it becomes a balancing act between potential risk of high BP versus being able to cope day to day . None of the medical people we've seen have been at all concerned about "high end of normal" BP in DD (or me come to that - I'm just "high BP cos overweight" ) fwiw.

Does any of that help?

MyVisions Sorry to hear your DD is in a rough patch. Any improvement? Must be horrid to be young and so ill. Your youth is when you should be zooming around with oodles of energy. How frustrating.

Thank you for all that info. Yes it's all very useful and reassuring. I had wondered about the affects of taking on all that salt...when everyone around you is treating the salt pot like the work of the devil and hisses when it comes out

I am still mystified as to why some days my disautonomia is so bad and others it feels a bit better. With all the new information I have, it seems odd not to be putting any of it into action, in case I 'cure' myself by the time my Cardiology appointment arrives.

MyVisions, sorry to hear your daughter is going through a hard time now. It must be so difficult to deal with as a young person.

And thanks for the info, that's very helpful. I'm afraid I've already had my tilt test, and there was no spray involved. I felt incredibly dizzy the whole time, but I'm now realising they told me not eat after the morning, and I had the test at 4pm, and lack of food always makes me woozy. But its useful for me to know that POTS could still be a possibility, even if I get sent away from the specialists again.

I can keep applying what I feel has made me better, although I do feel somewhat 'lost' doing it all alone like this.

I see my GP tomorrow and will let him know this information. I've completely geeked out and made plots and stuff to bring him :) Since I've been tracking my food in MyFitnessPal I can show him my sodium intake, and what it would have been without trying to increase it (because I just gave up incorporating it into food, and now have ~1300mg/day from two cups of broth). My average lines still don't barley hit "UK Average", although they now cycle just above the "NHS recommendation" level. I've done some BP readings outside of a tilt test, and they don't actually seem much different than a year ago. But I'll let him take a look at that.

wood, yeah, take a lesson from me and don't try to fix anything before the specialists see you! Although I must say I am glad I've done something, as I wouldn't wanted to have lived the previous 2 years like I lived the 3 years before that. Hopefully things will move faster for you.

I salt load - capsules - for POTs- and have regular blood tests. My salt levels are never an issue, somehow my body just uses all that salt. Since going on Ivabradine I've been way better with heart rates.

Hi murmuration. Have you seen your GP? Were they impressed with your geekery? I think mine dreads my arrival armed with paperwork and questions

That's interesting about food tracking on MyFitnessPal. Sounds very sensible to just get it done with two cups of broth. What broth do you use? I got my sodium checked this week (before I embark on salt loading!) which was 139 mmol/L and pretty much in the centre of the normal range. Has anyone noticed their sodium levels soaring with the salt loading?

Maybe if I ate lots of crisps I will be able to stand up and balance better?

Hi rumbling. I'm curious, what salt capsules do you take? Do you have regular sodium tests to measure it, or do you just feel well at a certain level and know how much to ingest? Durr, just read you have regular tests . How often?

Ivabradine, you say? I guess you have already been assessed and diagnosed with POTS? How long did it take to get a diagnosis and was this in the UK? No-one I've spoken to seems to have heard about it. Unless you are a fainting POTsey person.......

Ok, so I've had my -pre-consultant- ECG's and recovered from the subsequent relapse. Only 1 min resting ones, so alongside the supine one, I persuaded my GP & Nurse to allow me to sit up for one and stand for two of them.

The seated and standing ones say 'abnormal ECG' but that was no surprise. I was actually having a good day, so the top HR only got to 128. Dammit. It does however list:

Ventricular Trigeminy
Biatrial Abnormalities
Multiple Ventricular Premature Complexes
Right Atrial Abnormality etc

It all sounds very exciting, but I fully expect to hear that it's nothing to worry about, as that's all consultants have told me in the last few years.

And I got to play "You are probably deconditioned" Bingo while I was there.

BINGO!!!.......from the nurse

I got absolutely no guidance from any medical professional on amount of salt to take, just got told to 'pile it on my food'. Er, no thanks. To be fair, my cardio explained quite frankly he knew very little about POTS, and my GP equally had no previous experience of it.

I get the G&G salt capsules which are mixed with rice flour so easier on the stomach. Initially I took 3 capsules 4 times a day, and that worked pretty well. I was able to ease that down, and since the Ivabradine I'm down to 3 in the morning and 4 overnight as my bp often really bottoms out in the early hours and that seems to stop it.

A couple of times when things got really bad with heart rate, dizziness, nausea and fainting I've been sent to A&E for IV fluids which worked immediately, so I started making up salt/sugar rehydration fluid to drink at home on bad days. The recipe is easy to find online but essentially about a quarter teaspoon of salt and two of sugar in half a litre of water. I also cheat and buy gatorade from Tescos which is not cheap but does the same job. I've had plenty of bad patches but haven't needed to go back to A&E in two years, so it seems to work.

I've had 6 monthly blood tests over the past four years and my sodium level has never been out of the normal range.

Yes, diagnosed in the UK. I got passed around the system for a long time, initially investigated for MS, then diagnosed with hypermobility syndrome and fibromyalgia, but I had a lot of symptoms that didn't fit fibro. I got my GP to refer me privately to an ME/CFS/Fibro specialist who met me and said he didn't agree with the fibro diagnosis and I wasn't one of his patients but he thought he knew what I had, and referred me to a cardio. The cardio did a holter monitor - can't remember now if that was 48 or 72 hour one - and a poor man's tilt table test which has been repeated at each appointment, and he diagnosed POTS. He started me on propanolol which certainly helped and I did ok with that for about 2 years although still often saw ridiculous heart rates. Then when I had a bad patch that wouldn't stop he switched me to Ivabradine which has been much, much better.

I have a lot of issues with orthostatic headaches which my GP doesn't really know what to do with, rheumatologists have been helpful with suggestions for muscle pain and fatigue, and my cardio is great but sees his responsibility stop at a normal heart rate which is fair enough. There are a LOT of other POTS symptoms and hypermobility symptoms that make life difficult but it's hard to find help from a medic who looks at the whole picture rather than specialists who focus on their one bit.

Just to add reading your most recent post: I have found with my cardio if the monitor in front of him says in that moment a relatively normal reading then he ticks the box and ends the appointment, and anything I say about problems I'm having gets politely brushed off.

I have learned to not manage it the way I usually do day to day when I have an appointment so he sees for himself what I'm talking about if I have a problem. When I knew the propranolol was no longer working I deliberately walked from the bottom car park on my way to the appointment instead of parking near by as exercise was shooting my hr ridiculously, and then took the lift up to the cardio dept as lifts also cause me issues. When the nurse called me in to check my hr, I'd been sitting calmly in the waiting room reading a book for ten minutes, she'd watched me do it, so was surprised I was sitting chatting with her with a hr of 155. That got a bit of a reaction. On the Ivabradine I could do all that and still not see my hr go much above 90, it's much more effective.

*rumbling" you are a Thank you so much! Am reading all about G&G & Gatorade, Propanonol, Ivabradine & am spinning

Full marks to you for managing most of this by yourself, especially as you are the fainting end of POTS .

I read this week it takes an average of 10 years to be diagnosed with POTS That's hell of a long time to not be able to stand properly.

I am digesting it all & will be back with more questions. I have been near fainting, but have never actually passed out, so I fear I'll be turned away from Cardiology. I'm paying close attention to your posts & will definitely have you on my tactical team!

I have been musing over the exercise thing beforehand myself. When I'm a liitle active & the adrenaline kicks in, I start to feel better! a bit high. I can't quite work out if my HR is higher then or if it's higher when I've been resting lots & just tried to get upright. taxi or bus/walk to hospital?

Hi wood, thanks for asking - just got back. GP I think was a little overwhelmed with my plots :) But it did convince him to not start me immediately on hypertensive medication! Which I think would be a disaster for me. He's worried about my diastolic pressure, which is running about 90. However, that's the same as a year ago, before my salt increase, which suggests that isn't influencing it. Although the plan now is to see him again in 6 months, and if it's still around 90 (and this time I'm going to take some regular BP measurements at home - I only had a handful of non-tilt test measurements to go on ), we'll try lowering the salt, and if that doesn't work, maybe then think about medication. I'm honestly terrified of medication that might worsen my POTS symptoms. I am so happy to have some quality of life back, I don't want to make that go away.

Hmm. rumbling, that's making me think about making sure I get to GP nice and early so I can rest beforehand (otherwise I've just walked 1.5 miles uphill) and maybe my BP won't be so high? Based on my home tests, it seems my BP is higher when it is working to manage what would have been POTS issues. So if I do the opposite of you - try to minimise POTS issues, I should have lower BP at the GP.

And, yes, GP saw the tilt test letter (which I haven't seen) and it says no POTS. So I suspect that's it for me. I'm really struggling to handle daily life, and all these medical appointments make it even harder. If all they're going to do is tell me nothing is wrong with me, I don't see the point. So, wood, don't treat yourself!!

Re: deconditioning. I'm wondering if in fact getting into massively good shape can help - but I seriously mean mega-fit. Which if you have CFS/ME isn't something that's really obtainable, due to PEM. And I don't think average 'good' fitness would do, so you'd really have to be planning to go all the way.

Looking back on things, I lived for about 4 years with POTS symptoms without any resulting fatigue - just gasping for breath when my HR soared over 200. At that time I was mega-fit. I was a competitive gymnast (25+ hours a week working out and 'conditioning' - and I would regularly gasp for breath and suck on a useless inhaler for my 'exercise-induced asthma' after each routine at a competition), had a manual job that had me on my feet most of the day including some seriously heavy lifting, and in my 'spare time' I rode horses and hiked! As soon as I got a sedentary job and stopped competing, yet still continued to work out regularly and hike and do all those things, the fatigue issues started. I've lost weight now to the weight I was then, and am surprised at how thin my limbs are comparatively to before (and how tubby my belly :) ). I have a 'thigh gap' for the first time in my life - meaning that I've lost several inches of muscle around my legs (because it wasn't fat back then). I don't quite know what to do with this idea - I don't really have the time to become an athlete again, but could I work on increasing muscle mass? Maybe weight-training?

Do you know if you have CFS/ME, wood? I'm still not sure, but I really seem to not be having last bad effects from exercise (I remember your post about adrenal fatigue).

I've only gone out totally once - in casualty at the time - but have on numerous occasions got right to the point where everything spinning, collapsing, unable to move and scariest of all unable to speak. Just too low blood flow. Only happens when things are really bad and I get plenty of warning before getting that far. Mostly my body prevents fainting by ridiculous heart rates to compensate, although I've learned to recognise being very grouchy as a warning sign that I need to lie down and get some blood back in my brain.

A friend in the US has the full blown fainting type and drops, multiple times a week, it's crippling. I think we're luckier!